LA: Welcome to Special Needs Daily because laughter is a therapy we can all afford. I'm LA, and this morning my body decided it would also like to participate in this week's episode. Because I have a fever blister right here on my lip. Not subtle, not discreet. This thing didn't quietly show up. It arrived like it had a reservation. Apparently, mentally preparing for my annual oncology appointment and battling with one of my son's teachers over the last few days was stressful enough and my immune system chimed in with, you know what? She doesn't look stressed enough. Let's put something on her face. So now I have what appears to be a tiny billboard on my lip announcing LA is currently at capacity. so welcome to episode 11. We've got IEPs, we've got school drama. We've got oncology, we've got a fever blister, And somewhere downstairs, I'm relatively certain there is a chicken nugget being inspected like it may be entered into evidence. So I'm gonna just dive right in. Here's what happened. One of my twins has been coming home with a simple communication sheet. Nothing fancy, nothing laminated, nobody needed to call Sacramento. It's basically here's his schedule, here's what he worked on, Here's how he did. And for the mother of a completely nonverbal child, that piece of paper is gold. Because when your teenager comes home from high school and you say, How was your day? I don't get fine. I don't even get the teenage grunt. I get nothing. my boys don't come home and tell me, mom. PE was great. Mom, I hated math. Mom, somebody made me laugh today. Mom, I threw a football. Mom, I had a hard time waiting for the bus. They can't tell me any of it. So when somebody sends me a piece of paper that says what my child actually did during those hours when he's away from me, that isn't paperwork. That's a window into my son's life at school. And I treasure it. So naturally, I thought. why isn't my other son's teacher doing something similar? Seems reasonable, right? you adorable little optimist, LA. So I sent an email. A nice email. No, a very nice email. I specifically said I wasn't asking the teacher herself to sit down every afternoon and compose The daily adventures of my son. I wasn't requesting footnotes, no bibliography, no hardcover edition available on Amazon, Just some communication from the adult staff who spend the day with my son, more specifically, his one-to-one aide, who happens to be with him from the time I drop him off in the morning until the time he's put on the bus in the afternoon. What did he work on? Did he participate? Was something difficult? Did something go particularly well? You know, his school day. And I was told by his teacher. That her classroom doesn't do daily communication journals. But if there were any unusual or heightened behaviors, she would personally reach out to me. Well, I don't only want to hear about my child when something goes wrong. I want to know what my son is doing for the six plus hours he's there. Did he participate? Did he have math, English, speech, or PE? Did he laugh? Did he engage? Did he try something new? Did he work hard at something? Did he struggle and then figure it out? Did he spend the entire six plus hours sitting on a beanbag chair in the corner? Those are the pieces of his life that I don't get unless somebody tells me. And I'm his mother. I'm his only parent and the most vested member of his IEP team. I want to know what my son does in school, not just his noteworthy heightened behaviors. But after I asked for a comparable communication for my son, the wonderful communication I had been receiving for my other son stopped immediately. Yep, apparently I accidentally hit the unsubscribe button. And then I was told that the reason behind ceasing that communication was because in high school we need to promote independent advocacy. I'm gonna give all the special needs parents listening right now some time to sit with that one. Independent advocacy for my completely nonverbal, profoundly autistic children with global developmental delays and intellectual disabilities. I'm going to need to address that rationale directly. But before anybody comes after me, I'm all for independence. I absolutely support developing self-advocacy skills for both of my sons to the maximum extent appropriate to their individual abilities. However, as I just stated, I'm going to state again for the people in the cheap seats. My sons are completely nonverbal students with profound autism, global developmental delays, and intellectual disabilities. Neither of my boys can presently come home and independently communicate what occurred During their school day. so developing self-advocacy skills and providing meaningful homeschool communication to the parent of a completely non-speaking student are not mutually exclusive objectives. Teach my boys all the skills. Challenge them. Help them communicate. Help them make choices. Help them advocate for themselves in whatever ways are accessible to them. I will be standing in the front row cheering louder than anybody. But until one of them walks through my front door at 3 30, tosses their backpack on the floor and says, Mom. You are not going to believe what happened in third period. I'm gonna need the staff to communicate with me. My boys can develop independence and their mother can know what happened at school. It's not one or the other. At this point, Jersey mom was pacing back and forth. IEP mom took to the keyboard and I wrote the email. Then another email. Then a clarification of the email, then an email clarifying the clarification. At some point, I believe I had created an email cinematic universe. And let me tell you something: there is a very particular skill special needs parents develop when you type what you want to say, delete it, walk away, come back, delete another paragraph. Remove the word ridiculous, that's in all caps emboled. Remove the other word you're definitely not allowed to put in a school email. Drink some water, question humanity, and then type, thank you for your consideration. That, my friends, is no easy feat. Because what I wanted to write and what I actually sent were not even distant cousins. Eventually, I was told a communication journal had been placed in my son's backpack. Great. What progress. Look at us. Then I opened it. Favorite food, favorite activity, and three types of circle faces for participation. And To add insult to injury, it was my son's unintelligible handwriting underneath highlighted written words. I'm sorry, what? I had asked the adults to tell me about my nonverbal son's school day. And somehow my nonverbal son got extra work. I just stood there looking at this thing, visualizing how my son must have been struggling to write these responses to provide me with information. That I had asked the adults to provide. That sent me spiraling. I mean the daycare level communication with three prompts: favorite food, favorite activity, and a smiling face, sad face, and a neutral face to be colored in for participation. and this was all after I had very clearly asked for meaningful information. About what my son actually did during his school day. I even attached the form that I was getting from the other teacher. So this three-lined communication wasn't just dismissive. It was petty and mocking. I know what his favorite food is. I'm his mother. I have purchased enough of it to survive the apocalypse. I don't need a daily update informing me that my son still likes pizza and going on the swing. I need to know what did he do? What did he work on? How did he participate? How did he engage? Was something particularly successful? Was something particularly difficult? Because, and stay with me here, he can't tell me. That's why we're doing this. So I sent another email very clearly. Please don't turn my request for staff to parent communication into another assignment for my son, with very specific information to be provided broken down by periods, one sentence each. That's six sentences. And guess what came home after that very clearly written email request? The same damn thing. Just a different color highlighter. And at that point, even my lips said, I need to speak with management. And that's approximately when the fever blister arrived. My body apparently decided written correspondence wasn't getting the job done and escalated directly to dermatology. Because while all this has been happening, there's another appointment sitting on my calendar. City of Hope, my annual cancer appointment. And I can joke about almost anything. You know that about me by now. Humor is how I get through the things that scare me the most. But this one, this one still gets me. Eight years ago this month, I heard the words you have very aggressive triple negative breast cancer. Not exactly the sentence you put on a vision board. And after 16 rounds of chemo, a double mastectomy, 28 rounds of radiation, and all the fear that comes with wondering whether you're going to get to watch your children grow up. I am here eight years later, and I am extraordinarily grateful. But annual appointment week, it does something to me. I can be perfectly rational for 11 months. Then that appointment appears on the calendar and suddenly I'm conducting a full body investigation. What's that? Was that there yesterday? Why does my wrist hurt? Did it hurt last Tuesday? my God, did the cancer come back? so as I was sitting there writing these school emails, trying to find the right words, trying not to sound angry. Trying to explain for what felt like the hundredth time why I need people to communicate with me about my boys, I looked at that city of hope appointment on my calendar. And suddenly the two things didn't feel completely separate anymore. because underneath all my frustration about my son's teacher, and underneath all my anxiety about that appointment, Is the same thing. My boys need me. That's it. That's the nerve underneath all of it. I'm not fighting for a piece of paper. I'm fighting for access to the parts of my children's lives they cannot share with me themselves. And I'm not anxious about City of Hope because I particularly enjoy catastrophizing in medical buildings. I'm anxious because I have two boys who still need their mom. Not casually, not occasionally. They need me in ways that are difficult to explain To someone who hasn't lived this life. And I need, I desperately want to be here for a very, very, very long time. I believe that's something people don't always see about caregivers. We're carrying things while we're carrying other things. You can be scared about your own health while arguing about your child's education. You can be waiting for an oncology appointment packing lunches. You can be writing a scathing email demanding an IEP meeting while somebody needs help in the bathroom. You can be worried out of your mind. And still have to figure out what they'll eat for dinner. Nobody rings a bell and says, due to maternal overload, all requests for snacks, iPads, clean laundry, and bathroom assistance have been suspended until further notice. Life doesn't stop. So we keep going. Not because we're superheroes. Please don't call me a superhero. Superheroes get capes, I get laundry. We keep going because people we love are counting on us. So here we are. I've got one IEP meeting headed onto the calendar, another one hopefully following directly behind it. I've got my annual oncology appointment tomorrow. I've got a fever blister that deserves its own SAG card. And I've got two teenage boys who will come home shortly, completely unaware that their mother has spent approximately 47 hours discussing. How to find out what they did at school. And you know what? That's hard. I've said this before. My life is hard, but my life certainly isn't bad. Believe it or not, there's a lot of good here. So much laughter, so much love, so much absurdity, and apparently so much email. Episode Lucky number eleven. Maybe that's the lesson this week. Lucky doesn't always look like winning the lottery. Sometimes lucky looks like being eight years out from the scariest sentence of your life and still being here to fight about communication journals, still packing backpacks, still advocating, still laughing, still showing up, And still being needed. I'll take that kind of lucky. And to every special needs parent or caregiver listening who is carrying something nobody around can see, maybe it's your health, maybe it's money, maybe it's your marriage, maybe it's exhaustion, maybe it's fear about your child's future. Maybe you're sitting in your car right now because it's the only place nobody can find you. I hope you know this. You don't have to feel fearless to keep going. Sometimes courage looks remarkably unimpressive. Sometimes it looks like making that appointment, sending that email, getting everybody fed, and trying again tomorrow. And if your body decides to commemorate your perseverance with a fever blister, don't worry, there's a cream for that. Okay, let's pray. God, give us an abundance of strength, stamina, patience, and compassion for whatever today brings. For those of us carrying fears we don't always say out loud, please give us peace in the waiting and courage for whatever comes next. Watch over our children when we cannot be beside them. Help us advocate with strength, wisdom, and grace. And please Always give us enough space to find the laughter. Amen. And remember, my friends, you're doing way better than you think.