- As the pandemic started Jan. 2020, I called Marcus Autism Center in search of resources, I was put on a waiting list.
- Different problem behaviors occurred in our house. I called my pediatrician… What is it like to raise a child with a disability? How many times have you thought they should get that child some help? In the line at Target while a child is out of control. Your child’s classmate kicks and pushes her classmates. Your preteen stops eating dinner and then breakfast. Schools and well meaning neighbors and anxious grandparents suggest it regularly. I have thought it. Oh the stories I could tell. (Well actually, I have told these stories and written posts regarding the difficulty of finding care of people with eating disorders but what about Mim.) So many people walking around with a thousand initials after their name… And why are we without the help she needs?
- I had an online appointment with pediatrician which included some crying from both me and the pediatrician. Doc said she would refer us to an OT and Marcus Center for severe behavior to address difficulties with emotional regulation and pica (eating non-edible items).
- Referral department at pediatricians has the gaul to send me the same dittoed sheets I have seen since my kid was two years old. It lists Occupational Therapists and Psychologists in the community. I have called the professionals on this list before. They don’t accept Mim’s SSI or they don’t feel comfortable working with kids with severe disabilities or they just claim to not be a good fit.
- I called that Pediatrician back and reminded the phone answerer that the Doc and I had cried together and I needed to be referred to be Marcus and CHOA (Children’s Hospital of Atlanta) and not given the same info that has been given out for the past 12 years. I was reassured that would happen.
- Marcus called me and explained that because Mim does not have an autism diagnosis they cannot see her. I explain the whole situation and they say they will discuss my case at their next team meeting.
- CHOA and her pediatrician and her psychiatrist recommend I contact Marcus again to address her specific severe behavior of PICA because Marcus is the only place that addresses pica.
- Marcus called and interviewed me about Mim’s case. They decide she can be evaluated by the severe behavior department. After I wait on the waiting list, they will get to us.
- Time for her school IEP, I bring up Mim’s behavior needs and they say they do not see any of that at school. I explain what a struggle it is for Mim to be a person after school and they dismiss me. I ask for OT services to address her emotional dis-regulation and they dismiss me- but they will continue to work on her typing skills.
- OT through CHOA begins after two miscommunications and two months of phone calls. We arrive and OT is on the third floor. Mim will not go on the elevator. The stairs are locked and reserved for staff due to security reasons. The elevator is the only method up or down and it is disability friendly. But Mim’s disability detests elevators and will not even be an acquaintance of that moving mysterious box. She is missing at least parts of the ability to right herself in space. Security is called. After 15 minutes, the guard escorts Mim and I up the stairs with Mim apologizing as I cannot hide my impatience with the whole situation.
- Weekly CHOA visits at the far office from our house and schools address Mim’s fine motor skills, which is the specialty of OTs. But Mim is getting OT to address emotional dis-regulation which is another subset of an OT’s job. I will give you that Mim’s adorably long fingers which do not connect to her hands like any other human being I have ever seen, make fine motor skills a real drag. Yep- she needs work on her fine motor skills. Her school OT decided that after working on handwriting and scissor cutting and zipper zipping that we should shift gears and focus on typing so- Here we are in search of OT to address Mim’s lack of ability to self soothe and we get coloring, shoulder exercises and thera-putty tasks- and God knows, we need those exercises as soon as we can put our selves to sleep or as soon as we can express our anger with words or as soon as we can use an elevator to get to our appointments.
- I flip out and email her teachers. (see BLOG POST Dear IEP Team) And now none of her teachers will answer my emails except her case manager. Even the principal seems pissed at me.
- Marcus calls and they speak to me like I have just won a new Camaro and this is the radio calling. The scheduler speaks with excitement and patronizing happiness. Mim and I can come for our assessment with the Severe Behavior Department at Marcus Autism Center even though Mim doesn’t have a diagnosis of autism. Our appointment is two months away.
- Her psychiatrist met with her team of psychiatrists and decided to change her medicine and now Mim is taking a med with some scarier side effects to see if it helps with emotional regulation. The psychiatrist is relieved that her appointment with Marcus is scheduled because she does not feel comfortable treating Mim because she does not have this level of specialization and Marcus is THE place to address PICA.
- Thanksgiving came and went on the new medicine and I can’t remember Mim showing happiness all week. Have I given her a new problem by trying to solve the old ones?
- Continued appointments to address fine motor skills at CHOA with the OT. More calls to security to get us up the stair well. More inconveniences for a mom stressed by appointments in general. Memories of Addy’s heart failing as she lost more weight in the exact hospital defeat me. Patientless, I explain to the OT scheduler our problem with the elevator. She agrees it is a difficulty and she summons the office manager. I stand inhaling all my strength and a little indignance. Mim has a disability and the stairs are a reasonable accommodation for her, just as an elevator is a reasonable accommodation for people with physical disabilities. I’m ready to express myself. Out rolls the manager in a motorized wheelchair. I swallow my pride. I will not use my reasonable accommodations argument with this woman. She is at least sixty and she is very familiar with any accommodation issue I could ever voice. I am embarrassed that I am Karen. The solution she is offers is to call ahead so they can come to unlock the door when we arrive.
- We keep following the yellow brick road. I am the Scarecrow, the Cowardly Lion and the Tin Man. Mim bravely skips ahead. She can’t understand why we are going to visit the Wizard. She asks “Do you think you can’t take care of me? You are a good mama. You can do it.” ( I had been telling my inquisitive girl that I need help to figure out the best way to help her. So many nights I fight back tears as she knocks over stacks of books and baskets of folded clothes in anger and frustration because maybe she couldn’t get her wet foot into her tight pajama pants. She exits the bathroom proud of her newfound independence. She can turn the faucet on and off by herself and wrap herself in a towel. She trip traps down the hallway to our room stepping over and around socks that fell out of their baskets. I peek down the hall while I am getting her three medicines out of their protective containers. I smile at her pride and twitch a bit waiting for the other shoe to drop. Her overt happiness will end in the overwhelming sadness. “SHUT UP, Linus. OUT.” She yells at her favorite of our dogs. The mattress creaks as her wet body flails. The pajama pants stick and crowd her nail bitten toes and too long feet. With all her strength she forces her foot into a pant leg where there is no foot hole. “Mim, want some help?” I hear the picture pushed off it’s nail as it scrapes the dry wall and lands on the blankets flung off the bed. “Leave me alone. Do not come in.” The tall book stack is unstacked and forced to be a door blockade. I breathe deep and slow to quiet her rage and cussing, willing my deep breaths to be a contagion. My peace has more momentum than her fury. I insist with every exhale that Mim will except my conversion. She resists against the door and piles of books and tangled pajamas. Her crying lies in a heap and I pressure my chubbiness of fat and love through the moving crack. “I’m sorry mama. Will you help me? Do you promise you will always be my mama? I’m so glad Willie and Moona (her birth parents) picked you. ” I hold her crumbled nakedness. Breathing strength and warmth into my muscles and brain and heart so I can be what she needs. I offer my whole self to regulate her anger and her fears. My body works for her body. My heart pumps for hers. The pajamas are on. HGTV is on the TV and I pat my girl. My legs bounce rhythmically and my right hand pats her back as my left hand cradles her shoulder firmly. My body gives her my exhaustion. My system regulates her system. I power us both. She powers me. I could never do all this for just myself. I hope and pray and weep and beg that someone can help us have Mim power herself with less extreme jolts and painful shocks.)
- Mim has a regularly scheduled check up at the pediatrician but we end up with a different doctor- an older Indian woman. She asks if we have any concerns or questions and I start in a broken voice, “Where do people like us go in this great big city to find the resources we need?” I get the name of a legend in developmental pediatrics. Even her name is magical. Georgina Peacock. There are maybes and hopefullys and the fact that she volunteers one day a month in an office at The Good Samaritans. Long shot. She is a professor and CDC something or other but maybe we could be squeezed into her one day a month schedule. I am relieved and hopeful again. A doctor offered me information I had not been offered before. She didn’t seem dumbfounded by us.
- The day of our appointment at Marcus arrives. Mim doesn’t want to go. Somewhere new. What if they have shots or vaccines or blood pressure cuffs? We wait by a very large fish tank. We are taken back to a padded room. Even the light switch is covered by a cut out of a padded wall the thickness of a gymnastics mat. The nice young therapist explains that she will interview me, and Mim will go play in another room with a nurse. Mim hates this idea. She huddles closely as I sign four or five papers that give the team permission to touch Mim in case of an emergency. She could be put in a hold for her own safety… I explain to Mim each piece of paper and say that this stuff is for just in case. Most people never have to do this stuff- this is for emergencies. The Wizard appears to use mysterious words and to want a lot of power. When the nurse comes to take Mim to play, Mim asks if there are any policemen there and if she will be hand cuffed. I push away tears. Two hours later, after answering all her questions, this therapist recommends that Mim take part in their outpatient severe behavior program.- 12 weeks, 5 days a week, 5 hours a day. She will call me Friday.
- I feel four things- Fury at her school. Relief that the Wizard understood our need for help. Disbelief that Mim needs that much help. Mom guilt. I went through a week of avoiding these feelings and feeling these feelings. And crying.
- I miss the Wizards call on Friday at 5:45pm. Monday is a holiday. Tuesday the Wizard calls – Mim does not have a diagnosis of autism so she cannot be in the Severe Behavior Outpatient Program. Insurance pays for the program by using codes for ABA and ABA is only paid for if one has a diagnosis of Autism. I can get back in the Marcus line and the wait list is 6 months to a year or more and then she could probably be diagnosed with autism and then she could be a part of the program. Meanwhile, Mim could be seen by community providers outside of Marcus and receive Cognitive Behavior Therapy. I ask “Do you think it would be hard for Mim to have good outcomes from Cognitive Behavior Therapy given that she is diagnosed with an Intellectual Disability?” I am assured my question is a good question.
- Crying on my way home from work, a man stood at his usual corner dancing with large arm movements and cheer. He smoked something with a tiny gold ornament pinched between his fingers and inhaled his peace. His black jacket was spray painted with illegible to me graffiti- but as I tell my kids, I probably wasn’t his target audience. He danced and waited for cars to stop at the red light and he would do his usual charming silent ask for money while respectfully distanced from our car windows. I sat in my car crying with a warm bottom and thighs with the seat heat on high. And he saw me crying as I wiped my nose on my sweater sleeve. He leaned over and mouthed- “It’s going to be ok.” He danced and charmed another car window and came back to me and he bent down again to offer understanding and encouragement.——New low. I am receiving love and generosity from the man on the corner. While the leather seat of my Subaru warms my butt. I have no idea how to feel
- Another Friday arrives and with the help of alone time watching blackhead removal videos and reading David Sedaris’ diary, I have decided I am okay.
- Sunday, Mim and BeBe and I are watching a red tailed hawk as we wait in line at Revolution Doughnuts. I say, “Hi, Aubee.” to the hawk. Mim disagrees. I wait outside while they order. Aubee (my dad) the hawk sits high atop a pole. I watch him sit there and I hear his advice. BeBe is stressed out a million adulting things and I want to fix stiff and parent magically. The hawk sits and I decide Aubee is saying all you can do is sit with her in her struggle. I can’t fix it. I can just be there with love. Aubee flies away all the sudden as the Marta train rumbles by. Huh? Aubee liked trains. He would never be afraid of them. Strange. I guess Aubee had to adjust to his birdness.
- I have been email fighting with Walt over issues regarding finances and children. I stand my ground as the world returns to the crumbly faulty state of Walt. I get the advice when they go low, we go high. I drive on a high overpass that flies way above the tallest mountain through fluffy clouds. The overpass is named Michelle Obama Parkway. I drive right past steep downhill exits called Throat Punch Boulevard and Fuckety-Fuck-Fuck Foolish Lane.
- Our Alexa refuses to obey Mim and Katie. She acts deaf to their requests or even worse she chooses to piss them off by misunderstanding their frequent and persistent yells for Disney songs. Katie wants the Princess and the Frog and Alexa is mute. The whole world can be so ableist. The talk to text feature on my phone was to be a miraculous technology for people with disabilities. But if the iphone can’t at least figure out that Mim’s Rs are Ws- who can they help. She repeats over and over slower, faster, louder. Nothing but misunderstandings.
- I was looking in my important papers picnic basket. BeBe and I can’t find the ticket she got. The police claimed she didn’t have car insurance but she does. We all have the same policy. We need to take care of the fact that we missed the court date and they want $1,700. I did find the stocking stuffers I misplaced. They were under the millions of credit card applications and Ace hardware store coupons. I gave Mim her new found slime. I might save the rest for a rainy day.
- I answer the phone at work during my break and it is Marcus’ Care Coordinator. She wants to email me the list of cognitive behavioral therapists who work with kids in the community with autism. I explain that we don’t have a diagnosis of autism. I explain how we were misdirected or miscommunicated with or about and I explain that Mim is absolutely perfect exactly like she is and she just has some behaviors including pica that every doctor and therapist insists is only addressed by Marcus Autism Center. She said she would email me the list. We aren’t lepers. She is a beautiful wonderful child who just last night sat with me and cleaned out the bottom of our shared closet to divide the shoes into categories- to be given to a smaller cousin, to be given to Goodwill, to be worn by Mim, to be worn by mommy. She tried on shoes to prove they still fit. She angered the misshapen foot. She spoke with dignity about someone needing to fix her foot. She is my girl. And then she feel asleep during her pattings as I watched HGTV and people insisting on walk in closets.
- Georgina Peacock- and we await our assessment with one more hope.
You are amazing. Mim is amazing. You and Mim are amazing. I could go on…❤️
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As you can imagine, I really appreciated this post and can certainly relate.
Sent from my iPhone
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