Coping with the darkness

Duvet Day

My new friend Lillian left an amazing comment, and as part of that she asked: “When you are in your dark place how do you force yourself to even get out of bed?”

Today just happens to be one of those days. I feel the darkness hovering and today is the day when I have to drop everything and deal with this before it gets worse. So that’s step 1: Pay attention and try to head it off before it gets dangerous.

Step 2: Tell someone. Bear has always been super supportive of me, but he didn’t get how this disease worked for a long time. We’ve been working on educating him and me learning to speak my needs and it’s paid off for us. This morning all I had to say was “I’m feeling the darkness around the edges,” and he knew what that meant. He made plans to get home from work as soon as he could, he’s planning to make dinner, and this evening he’ll be working on cleaning the house, since chaos in my environment is always a big trigger for me. I’ll also be reaching out to my network of friends who can just remind me that there is love and friendship in this world.

Step 3: Make sure I’m up on my medications. Medicating is really hard, particularly for people who deal with depression. I really try to be rigorous with myself but if I’ve gotten lazy or lost track, I have to address it. I also have some medication I can use when I’m sliding into one or the other of my poles, so I’ll use that.

Step 4: Decide what the bare minimum is that I need to do today. When I’m depressed then even fixing lunch seems insurmountable. If I hold myself up to my usual standards than the weight of it all will bury me. Some days the bare minimum is to just make it to the end of the day. Today I’ve decided that I can get Atti to and from school, and keep us both fed and safe. And maybe, after I’ve rested I’ll take a shower. And for extra bonus points I might even color my hair. Every single other thing will just have to wait.

Step 5: Self-care. When I have a cold, I love to eat popsicles and drink hot tea. They make my throat feel better and clear out my sinuses. When I am depressed, I do puzzles. I cross stitch. I watch British comedy. They make my brain feel better. The stigma around mental illness is so enormous that most of us have internalized it. I’ve found that my answer to that is to pathologize it. Treat it like the disease that it is in every way. When I have a cold I feel no shame about staying in bed and drinking tea. So today I will shake off the shame, stay in bed, and laugh at British sitcoms until I feel better.

If you are struggling, know that you are not alone. Take care of yourselves, friends.

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The Aftermath

The end of a road trip

I’m still recovering.

I did it. But I’m still recovering.

Last week I drove east in search of friendship, just me and my little guy with a car jam packed with everything necessary to make him mobile in the wilderness. I found it, and I found a new piece of myself and it was incredible. But that’s a story for later this week. You all know that I never try to pretend things are better or rosier than they are, and while the camping trip was successful, it was also HARD.

A nine hour drive by myself with Atti, a night staying up too late gabbing with friends and sleeping on the floor amongst a pile of toddlers, two nights in the woods, another night on the floor, a nine hour drive back, hosting house guests, picking tomatoes, throwing a party for my guest, and now canning all those tomatoes I picked. I may never get enough sleep again.

My dear friend Jerilyn and her five year old daughter, who were also at the camping gettogether, live in Oregon. So they hitched a ride back from Utah with me and I made them stay at my house for the rest of the week as payment. As we drove West over the salt flats (which are not snow nor glitter as she tried to get me to believe) we told our whole life stories to each other, tag teamed parenting duties, tweeted whenever our phones had bars, and kept each other company on the end of our ropes. A week of parenting on your own, away from home, all the things your kids are particular about, and any structure, is a challenge. And by the time we were driving home we were over it.

By 7 o’clock we were in Reno, two hours away from home and ready for a dinner break. After a week of camp food and fast food hamburgers, we got the brilliant idea to find a little restaurant where we could sit down and have a nice meal, the kids could stretch their legs, and we could take our time over food we actually enjoyed eating. Half an hour later after both google and yelp let us down, we pulled in to a round table pizza. With his wheelchair buried under luggage, I left Jerilyn to order for us as I carried Atti into the bathroom for a diaper change.

Of course there was no changing table. Of course not. So as only the end of a vacation will do to you, I abandoned all sense of hygiene and set Atti down on the floor of the bathroom while I used the facilities. But now that he is so much more mobile he wouldn’t just sit in the corner, he had to crawl away. On his hands and knees. On the bathroom floor of a Reno Round Table Pizza. He found his way to the drain and stuck his fingers inside, an ant crawling out, up his arm, and on to his face.

I washed us up as best I could and went out to our table where Jerilyn informed me that they were all out of everything we wanted, so she had to get creative with our order. And then we waited. And waited. And waited. An hour later our pizza finally came.

Our spirits broken and giddy with exhaustion, everything was hilarious. After the bathroom floor nothing scared me so when Atti crawled down off the bench and laid down on the carpet, I didn’t stop him. Jerilyn loves to tease me about my “brand” – Reese Dixon the domestic goddess – so she was laughing and laughing at Reese Dixon (TM) letting her son play on the dirty floor, when all her pizza toppings fall down her shirt and her 5 yr old asked, “Why are you laughing? Because you have food stuck in your boob?”

Just when we collected ourselves a kid who worked at Round Table came over. He couldn’t have been older than 17. He saw Atti, who was falling asleep by this time, old pizza crumbs stuck to his face, and said, “You might want to move him to a bench. That floor is filthy.”

We laughed right in the poor kids face.

Yes, I hit my domesticity rock bottom. My dirty child and dirty self ate pizza we didn’t want, after waiting too long, and I let him fall asleep on the floor. Of a Reno Round Table Pizza. With a floor so dirty even a 17 year old boy was disgusted.

But we went camping. So. It was worth it.

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Making a good first impression

Atticus is cute

California will forever hold my heart for what it offers to my son, but it doesn’t come easy. Moving to a new county means another bout with red tape hell. And moving in the summer means embarking on red tape hell in and around everyone’s vacations. It’s a challenge, but we’re making progress.

I had made an appointment with his Regional Center Service Coordinator for last Monday. This is basically the state agency that puts you in contact with all the other state agencies, and gets a whole lot of pieces moving for you. There are SO MANY moving pieces. From who provides therapy, to where we get Atti’s equipment, to seeing doctors and dentists, to which school he goes to, to paying for all of it, it’s kind of a big deal. And after making the appointment, I promptly forgot all about it.

Luckily most of these appointments occur at your house. They know that travel can be difficult for kids with disabilities, and most kids do better in their own environment, so I didn’t miss the meeting. It just started while I was standing in my bedroom braless while Atti was playing naked on the floor.

I heard the doorbell ring, tossed on a bra and caught our service coordinator as she was walking back to her car. She was kind and understanding and came in to make herself comfortable while I went to fetch Atticus, who had taken off his diaper, peed all over the floor, and then somehow gotten to the drink on my bedside table and poured that all over the place too. I was shouting apologies from the bedroom as I raced to clean things up, put Atti in a new diaper, figure that our service coordinator was already seeing me in my pajamas so she might as well just meet Atti wearing only his diaper, and as I brought him out to the living room I noticed there was blood all over his arm.

The night before I had been working on reupholstering some chairs and while removing some staples I stabbed my thumb with a screwdriver. It went right into the nailbed. It’s gross. And in my rush to clean Atti up and get him out to the meeting, I had apparently opened that wound. It was bleeding so profusely the service coordinator honestly thought we should cancel the meeting and just go to the emergency room.

I brushed her off with a now crazed laugh, tied a bandaid so tight around my thumb that it was more like a tourniquet, and tackled Atti with wet wipes to get all the blood I had smeared on him. The poor kid looked like he had seen things.

She was a pretty remarkable sport and we got down to business while I was quietly dying inside. I explained that since I was a blogger, no bad day was wasted and I now had my blog post for the day. I tried to pull up my site to show her what I was talking about, and then discovered that my internet was dead. Of course.

But honestly, as mortifying as that day was, it’s also an example of one of my silver linings in parenting a child with a disability. When I feel like I am at my highest level of fail, I have a team of professionals around me to put a hand on my knee, look me deeply in the eye and say with a profundity that speaks volumes, “I’ve seen worse.”

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Project Put Together has a long way to go.

I was setting the camera up on my tripod to make a video home tour of the new place, when one of the legs collapsed and the camera landed lens first on the floor. I held my breath while I checked the damage, but when I tried to take a picture the autofocus just made a sad little gasping sound. Luckily here in Sacramento is one of the best camera repair shops in the country, so repair is only going to take me another week instead of another month as I ship things around the nation, but it still means I’m camera-less for a little longer. So all my projects for the blog are halted.

This is only the latest in a string of my ridiculous clutzy mishaps. As I’ve been unpacking and fixing up little projects I have dropped things on my feet, ripped open cuticles, bashed wall corners, and covered myself in mysterious bruises.

I have had some crazy great thrifting and Craigslist luck lately, which I’ll happily show you as soon as I have a camera at my disposal, but one table needed a little support. So while we were out running errands I had Bear swing through Home Depot so I could pick up some metal braces and screws. I left the house without my purse as I usually do when he’s with me, so he gave me 20$ in cash, which I couldn’t imagine wouldn’t be enough for a couple of screws.

But it turned out to not be enough. Which I only discovered as I was in the self-checkout with all my stuff wrung up and a line behind me. I was 27 cents short. I’ve always been bad at calculating sales tax.

Being short at the register is one of my big fears. One of those irrational things that we all have that carry way more embarrassment for you than is strictly necessary. So as I begin quietly dying, my face burning red and looking about for a solution, a nearby checker sees my distress and pulls two quarters out of her apron pocket. I melt in gratitude and shuffle out of there as quickly as I can, my hands white knuckled around the screws and braces and receipt that I’m juggling because I don’t want to use a plastic bag. I, reliably, left the reusable bags in the car, so in penance I’m carrying my purchases tucked under arms and balanced between fingers.

And then I realize that no where in this pile is my phone. I roll my eyes and stomp my foot like an exasperated toddler, and then go back inside to search for my phone, and just as I get to the register I use, I see a family with a couple of teenagers leave. I immediately worry that one of the teenagers has found my phone and will keep it for themselves, so I frantically search around for it. The checker in charge of the self-checkout lanes comes over to help me out. He’s feeling plastic bags, he’s down on the floor looking under the register, and finally he offers to call it. And then my butt starts ringing.

I hardly ever wear pants with back pockets, but I did that day. And apparently I had put my phone there.

I slunk out of the store and got back to the car, Bear completely confused by my distress and what was taking so long, and even more confused when I opened the door, flung down my stuff and just shouted at him to give me a dollar. Which I ran back inside and left on the kind money loaning cashier’s station, and then ran back out while trying to avoid eye contact with everyone.

I am always surprised when people describe me as someone who’s got their stuff together. And yet it actually happens with regularity. These people must not read my blog.

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Callin It

Creative Mess

I have three more days of solo parenting, and in that time I have to prepare an hour and a half presentation for a women’s retreat I leave for on Friday. I not only missed teacher’s appreciation day, but I also missed the last day of school deadline for the presents I had in mind. Atti’s teachers have had him for nearly three years. They deserved quilts, but those are all still lying in pieces all over my living room as Atti crawls over them singing and pretending he’s a little baby that needs to be wrapped up in a blankie. I ran around town Friday morning scrambling for a plan B and came up with cheesecake cupcakes and gerber daisies.

The movers get here on Thursday, we move in to the new place a week from Monday, and then I can begin letting out the breath I’ve been holding for the last two months. We’ll still have to deal with all the red tape of getting Atti’s services started up in a new county, finding new doctors and a new school, and of course all the details that you never think about except when you have to move, but at least we’ll all be together again. The new house has a big bathtub and I plan on using it. I might even wait until the movers are done.

I’ll see you all on the other side of this move. I love you all for your patience and support. There’s light at the end of my tunnel.

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No words.

Reunited
I’ve been trying to write this post for three days and I still find myself sitting here with my mouth open and the words stuck in my throat.

Sunday night was the big Listen To Your Mother show and it was magic and empowering and has changed everything for me in so many ways. But I can’t even begin to process it because something else happened Sunday night that has me kind of reeling. And emotional. And giddily happy. And then scared silly. And then weeping with joy.

My youngest sister Dee flew in to watch me perform. She didn’t tell me, we hadn’t even talked on the phone in ages, and she wasn’t even sure if she was going to surprise me at all or just leave after the show – she was that unsure of what to expect from me. That last time I saw this woman she was ten years old. She got married nearly a year ago and I wasn’t there. I wanted to be. Desperately. But I knew that fractured family relationships would bring disaster on a day that she deserved to have for herself. So I put my dreams for her back in the spot in my heart where they’ve been locked for all these years. Hoping that a day would come when we could be together without the web of family dynamics.

love
She called my name as I was walking across the theater lobby and I couldn’t quite believe my eyes. She was crying, I was crying, my friend Sarah was snapping pictures while crying. I immediately made her and her husband Chris come back to my house where we stayed up until 4 am talking and crying and eating and then after a little more time on Monday they were back on a plane and I’ve been walking around in a stupor ever since.

When I ended my relationship with my parents, it was the wisest and hardest thing I’ve ever done. But it carried heartbreaking consequences for my relationships with my siblings. I have two sisters I don’t talk to, both for different variations of the same problem – repeating destructive patterns in our relationships that were set up for us by our parents. I wish nothing but every life’s happiness for them, but I am unconvinced that that includes each other. We all see our upbringings very differently and after years of sad experience I don’t think it’s possible for me to have a relationship with a sibling that denies my truth. I am rarely upfront about the pain I feel, I usually mask it under black humor and defiance, but this discovery was made at a cost so dear I didn’t think I could bear it. Some days I still don’t. I have to be careful what movies I watch or music I listen to because anything that reminds me of my siblings will send me into the dark place for weeks. This also means that I have kept the two siblings I do talk to at a distance. I am the only one who doesn’t have a relationship with my parents and after years of heartbreak so intense there are no words for it, I am wary and scared that all the hard work of healing I’ve done will be undone by getting too close to people who don’t see what I see. Not that I expect everyone to accept my way or no way, it’s just that for the sake of my emotional health I at least need people to let me have my own experience and not rewrite it into what they need.

Dee and Atti

Dee called me out on some of the ways I haven’t tried enough with her. And she was right. Because it is so so much harder to have hope than to just close the door and lock it. And she wasn’t quite right, because for most of her life she was too young to deal with this stuff. She was dependent on my parents and siblings and my own stuff would have been completely inappropriate to dump on her. Plus, I desperately wanted to believe she would never need to. That somehow it would have all magically gone over her head and I could pay the sacrifice of giving her up to keep her from ever feeling it. But I see now that I wasn’t giving her enough credit. She’s 24 now, not the 10 year old still living in my heart.

I think the thing that was the most┬ásurprising┬áto me in all of this was her reaction to me. She was so happy and so emotional and something as simple as me inviting her back to my house meant so much to her, it all made me realize I had no comprehension of what I meant to her. I’ve seen myself from afar, loving that little girl I helped raise like she was my own, tortured by the loss of her in my life, and I never once considered that she felt that way about me. I was going off of the experiences I’d had with my other siblings and I never suspected that she would miss me like I have missed her. And I don’t think she had any comprehension of how much I did. By climbing on that airplane she was taking a big vulnerable leap into the unknown and hoping that she wouldn’t be rejected. At first I was shocked she would feel that way, and then I thought, of course she did. Why don’t I pick up the phone to call her? For the same reason. Only I let it stop me.

When you see these feel good stories of friends and families reunited, they always stop at the hug. And there’s a reason for that. What comes next is pretty terrifying. We both have a lot of work ahead of us to forge a relationship that is free from the reins of family dynamics and is one that serves us both. We have a lot of time to make up for and a lot of assumptions to unlearn. But I feel so hopeful this time around. Any of the other times I’ve been here I haven’t felt matched. It always felt great, but dangerously one-sided, and sure enough, it was only a matter of time before the patched plaster cracked and the fractures returned. This time, I think it might actually stick.

 

 

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Hulk Smash

Food Coloring Monster

When people feel sorry for me and Atticus over the fact that he can’t walk, I always scoff at them and make inappropriate jokes about how awesome it is to have a kid that stays where we put him. It’s my dark humor helping me cope once again, while recognizing that it is actually kind of great to not have to babyproof and worry about messes and deal with injuries caused by playing too hard.

Those days are officially behind us.

We’ve now had an ER trip for one head bonk and had to cope with another one when he fell off the stair he was playing on, the other day I walked in to find him throwing all his bath toys in the toilet, and now he has gotten into Bear’s baking cabinet, found the giant bottle of green food coloring, and decorated his whole self with it.

And of course, OF COURSE, this sudden burst of precociousness would occur while I am parenting him on my own. Of course he would save up all his mischievousness and mobility for the moment it would drive me the absolute craziest. He’s a wily little sucker.

So on the food coloring day, I did my best not to eat my young, remembered my sense of humor and stopped to take pictures, and then calmly tossed him in the bathtub. The second his toes touched the water a cloud of green rose around him, so I took out his favorite foam letter bath toys so they wouldn’t get stained, throwing them in the toy basket we keep next to the tub. I scrubbed his face and I scrubbed his hands and left him to soak while I saw to the kitchen and my newly verdant tile.

By the time I came back to check on him, my little monster was doing a handstand with his naked booty in the air, balancing his legs on the tub while holding his whole body up with one arm while he used the other to reach for his bath toys and bring them into the water one by one.

Part of me wanted to shake him, and part of me wanted to collapse in awe at the physical feat he was performing.

That’s what I try to remind myself whenever his precociousness makes me bonkers. When he talks back in ways so clever I can’t help but laugh, when he finds brilliant little ways to problem solve around my discipline, when he manages to use his body in ways his therapists and I would never have believed possible to get into something he knows he shouldn’t, I swallow that impulse to scream, I take a deep breath, and I tell myself that this is what is going to get him the life he wants. He might have cerebral palsy, but it doesn’t have him.

If he can make it to adulthood without me killing him, he’s going to be able to do whatever he wants.

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Speaking my needs

936892_10200669188006379_461687719_n

Sunday was our most recent rehearsal for the upcoming Listen To Your Mother show, and I am relishing every moment of my involvement with these women. They are such a joy. After our run through, a bunch of us walked up the block for gourmet pizza and I ordered two meals like a glutton just so I could have leftovers. I love this place.

We were walking back to our cars, me in my signature high heels, arms loaded down with leftover boxes and eyes focused on reading a pamphlet about a local historical restoration project, when I looked up just in time to see I was walking into a tree. So I stepped to the side, right into a pothole. My heel wobbled, time slowed, and I saw that I was not going to be able to recover. My arms full and unavailable for catching myself, my subconscious lizard brain took over and without even realizing what I was saying, I heard my voice go, “Somebody save me!”

I still laugh hysterically when I think what I must have looked like to everyone else, holding my pizza box and flailing around, screaming for help. But Sarah just took one step forward, opened her arms, and kept me from breaking my face open on the pavement. She ended what could have been a disastrous fall with a hug.

Since then I’ve been thinking about my reaction. “Somebody save me.” From deep within my subconscious, so deep it passed the more common sense thought of just dropping the pizza boxes or not walking into trees, that expression welled up in time for someone else to act on it. It is a classic example of speaking your needs – spelling out exactly what I need from someone and trusting that they will act on that. In this case, I needed someone to protect my teeth from the approaching concrete, and that need was met with gusto.

Tuesday night I had another such moment. Solo parenting this time around has been ROUGH on me. Atti has chosen this week to suddenly get very precocious – more on that another day – and all of a sudden I have to monitor him and play with him and supervise him every second. He’s decided that with dad out of the house, he’s going to make up for his missed toddler years. I’ve been struggling and failing to meet the smallest of requirements of my usual days and when my sewing machine broke it was the last straw. I called Bear in tears, gasping for breath, and told him I needed more help.

And once I spoke my needs, they were met. He came home yesterday early, we mapped out a plan for how to arrange his schedule to better support me, we called in some friends to help, today I’m taking Atti up to Placerville so we can be tourists and see our new place, and tomorrow I’m cashing in a gift certificate I’ve had for ages and getting a massage.

It’s taken a lot of years and a lot of therapy to be comfortable with the vulnerability it requires to lay it all out there like that and be so naked about what I need. But it’s a skill I treasure. It has saved my sanity, and my skull.

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Single Parents, I Salute You

I’m now completing my fourth week with Bear working out of town, and I am weary. He’s come home three out of the four weekends and one night a week, but it hasn’t even made a dent in my energy deficit. Seriously, how are you people doing this??

Because I am not a total self-absorbed jerk, whenever I describe this challenge I refer to it as “solo parenting.” Because even as I struggle, I recognize it’s totally not the same thing as being a single parent. I don’t have to worry about how the rent is getting paid, I have a light at the end of the tunnel, and I have those wonderful weekends where I get to lock myself in my studio and have some quiet. Plus I have the easiest kid in the world. Any parent who is raising kids by themselves would laugh at me like a chump if they could be a fly on my walls.

Well, I suppose there was the minor thing of a surgery, an IEP, two specialist appointments, and three school visits to meet with therapists, but still. Other than that.

So today I just want to say, single parents? I’m proud of you. You’re doing a great job.

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Whether or not to be “That Mom”

Atti thinking

Atti had another IEP last week, and normally these things aren’t so bad for me. His teachers and school staff love him and I almost always leave feeling heard and supported and confident that my child is loved. Which is a pretty massive gift for any mom, let alone a special needs mom. I am always aware of how good I have it on that front.

But this one was a doozy. He’s about to go into Kindergarten. Which means that there are different measures that have to be applied for his goals. Which meant a pretty uncomfortable conversation.

For starters, Atti still doesn’t talk a lot. In fact, he talks so rarely that I’m tempted to say he’s approaching selective mutism. But a diagnosis for that is going to be rough, considering how many other variables we’re dealing with.

In children this young, the way they’re intellectually evaluated is mainly by tasks that require physical ability – handing over certain objects, pointing to objects, etc. – and in a kid that is physically impaired, it can be tough to evaluate. So then they go for verbal ability – answering questions, having a conversation, demonstrating comprehension. But if your child is verbally impaired, it’s even tougher. There are also some cues for visual ability – what they’re looking at and responding to – but if your child is also visually impaired, the whole thing is one big guessing game.

Which is where Atti falls in these evaluations. He can’t be counted on to respond with physical ability, he can’t be counted on to respond with verbal ability, and he also can’t be counted on to respond with visual ability. Tapping into that little brain of his is a big mystery.

I explain all of this because as I talk about the school psychologists reaction, I don’t want to paint him as a villain. His job is to remain impartial. He doesn’t spend all day every day with these kids. He has to go with what he sees on the test because he has to be clinical, and because no matter what is going on in Atti’s head, if he can’t do these things when asked, school is always going to be a challenge for him.

But his reaction hurt. If the tests are to be believed, Atti would be profoundly mentally retarded. Which I think anyone reading this blog for any length of time would know is totally not true. My child has known his alphabet since he was 18 months old, has been saying it backwards from 2, and has been reading since 4. And yet on the test? He wouldn’t even reliably say his ABC’s.

The school psychologist, in as gentle and reasonable way as he could, suggested it might be time to revise my expectations. That instead of college, I should be focused on the giving Atti the ability to make change for a dollar.

Every parent, whatever the needs of their child might be, eventually comes up to the point where they have to revise their expectations. Not every child can be a professional athlete, or go to Harvard, or be the President. Letting go of that is part of the work of parenting. But every parent also has to be their child’s advocate. They have to be the ones to push and fight and clear the path ahead of their child until they’re ready to do it on their own. Sometimes that means having faith in your child when no one else does. Sometimes that means sticking it to the man and hiring a lawyer and drafting laws like so many of the moms of kids with disabilities before me. Those moms are never far from my thoughts. My road would look very very different without them.

But because so much of the hardest work has been done for me, I always wrestle with what is left. Those mom’s have made it so that I have the legal right to get Atti every possible educational opportunity. But just because the opportunities are there doesn’t mean they’re right. I could hire a lawyer and sit in front of a judge and force the school to put Atti in a typical kindergarten classroom, where he might be so left behind by the pace of what they’re teaching that he’ll give up on school altogether. Or maybe he’ll see all the other kids communicating in full sentences and having conversations and using the toilet, that he’ll decide that’s what he wants too.

Maybe by pushing him I’ll be a Tiger Mom and get fantastic results, or maybe I’m the Toddlers and Tiaras mom who thinks their child is the most perfect bit of creation when the rest of the world just sees a booger eater. Maybe I’ll be the best mother in the world and teachers will marvel at what we’ve been able to accomplish together, and maybe I’ll be “THAT mom.” The one that teachers cross their fingers they won’t have to deal with because I’m demanding and delusional.

By the end of the meeting we came to a good resolution. A lot of school districts have “LD” programs for kids with learning disabilities. This will put Atti in a class with kids who talk, it will give him a focus on academics instead of just life skills like making change, but it will be far more flexible than a typical classroom. I think we reached the appropriate solution. But I also know that my child is not intellectually disabled and I won’t let anyone tell him that he is. If it means being “THAT mom,” then I’ll have to wear that label with pride.

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