Walking in My Shoes: What it's Like Finding Out You're A Special Needs Parent

Dealing with this cerebellar hypoplasia stuff is a full-time job. A few weeks ago, I had to tell my boss at work that I would need some flexibility with my schedule because the amount of evaluations, appointments, consults, phone calls, emails, etc., that have to happen and can only happen during business hours. It's just mind-boggling and cuts into my work. And my boss, flexible and trusting, said he left it to me to manage my own schedule. But three weeks later, I have a new boss. When I was ten minutes late to my first meeting with him because Teeny’s OT was running late for our 8 am session that morning, I had to have the same conversation with him. He was so immediately understanding that I promptly resolved to work twice as hard. This means I am up late most nights catching up, which makes me tired, which makes me emotionally iffy for the next day, which makes me not a lot of fun to be around.

I am all business these days; I don’t have time to mess around. I am spreadsheets. I am to-do lists. I am folders full of neurological studies and nagging emails to neurologists, radiologists, nutritionists, therapists, and a pediatric neurosurgeon. I suddenly know lots of experts and they are all willing to help but so far they all say the same things. Yet still, I call, I fax, I email, I ship. I’ve sent copies of her MRI scans to two doctors I don’t even know, who agreed to review them, probably because I wore them down. I pore over articles and studies I barely understand. And I delegate all the stuff I now no longer have time for to my loving, patient, forgiving husband. He does the food shopping, goes dutifully to the post office, gets the car serviced, handles the playdates and the therapy sessions when I can't be there. I taught him how to use Google Drive on his phone so I can update his to-do list from work and see when he has logged in to look at it. If that's not Type A, I don't know what is.

Two weeks ago, I was making one phone call after the next in the Quest for the Elusive Medicaid Waiver. A Medicaid waiver provides Medicaid benefits to someone who does not meet the income requirements but needs it because they have some kind of overriding issue, such as a developmental disability. A friend told me Teeny would need that, especially as she aged out of Early Intervention, because the DOE, which takes over after EI, covers less and insurance doesn't always pitch in to help. Also, I learned that it can take up to a year from the time you're put on a waiting list to actually receive the benefit. So I basically didn't put the phone down until I had Teeny added to the waiting list of the only agency in town that helps kids under 3, but at that point we weren’t there yet and I was making a dozen calls a day just to find help with this one thing. One was answered by a very kind woman who told me there was a resource fair being held later that week. She told me that every agency servicing Manhattan would be there, and if I went, I’d get to meet a lot of the people I'd been calling face-to-face and maybe get some answers. So I rearranged my schedule and on that Thursday, made my way to midtown to the fair.

To call it a “fair” is a stretch. The address led me to a church on West 59th Street, a big beautiful building with colorful balloons strung all around the basement entrance in a sad attempt to appear festive. I heard women’s voices as soon as I walked through the door and was instantly reminded of the many rummage sales and other events I attended as a Brownie scout in church basements all over Jackson Heights. The room smelled like old people and instant coffee. There were ladies in house dresses serving danishes to a long line of people I suspected had shown up just for the free food. Volunteers were handing out name tags and freebie bags full of Tootsie Rolls, plastic pens and handouts no one would read. Many of the people sitting at the tables were clearly patients or clients themselves. It was a sad, sad place to be and I alternated feeling sorry for the people I saw there and for myself for being there.

And yet I wandered around, looking from table to table for a face, a name, an agency that could help. I spoke to a few people who were helpful, but no one there could makeTeeny’s problem go away. I chatted with a few sweet people. Others handed me flyers, brochures, refrigerator magnets, pens, a water bottle. Many asked about the particular “special need” I was dealing with. No one knew what to say. A few people asked me whether I was a parent, a caregiver or a professional, and when I said I was a parent, every single one caught their breath in the same way and said “Oh. I’m so sorry.” At one table, a man handed me a complimentary copy of Special Parent magazine and I had to restrain myself from throwing it back in his face. Instead I burst into tears.

I am not a Special Parent. And so far, Teeny is resisting being a "special needs" kid. I hate that word, special.

At the fair that was completely unfair, I sat in on a workshop that I thought would be helpful. A week before, I’d had no idea what benefits Teeny might be entitled to, so I gravitated towards the discussions about available resources. I sat down in a room filling with people who identified themselves, some in very poor English, as parents and caregivers of people with disabilities far more severe than Teeny’s. I thought it would be a coaching lesson on how to advocate for your kid, on what's out there and how to get it. I was wrong. As I listened, I suddenly felt very white and very overprivileged. The panelists went through the applications for Medicaid, SSI, SSD and other federal benefits very slowly and patiently. They spent the better part of an hour explaining again and again that once you get SSD you often lose Medicaid because suddenly you earn too much. Because I work with and for financially underserved residents of New York City, I know that the income requirement for Medicaid is $15,000 for a family of four. Once your family of four brings home more than $15,000, you are making too much. In Manhattan. I felt a wave of sadness and compassion for the people sitting around me. It’s hard enough to deal with what we’re going through now with the limited resources we have. I feel sorry for myself sometimes that I don't make as much as my peers because I work in non-profit or that we have to make a choice between this or that because we have only one income for the four of us. But these folks had no money, limited English skills and little education. I know that Teeny will get the services she needs because she has a mama who doesn’t give up. But I am able to be that way because of the many privileges I have. For someone still bitter about being dealt this crappy hand, I am very lucky. Relatively.

I was feeling worse and worse sitting there. So when I saw my phone light up with a call from a number I didn’t recognize, I stepped out of that workshop about welfare benefits where I felt overprivileged and undeserving, just in time to miss a call from the EIOD, that elusive granter of requests and approver of services. It was like missing a call from the President. In a full-on panic, I fled the fair in search of full bars. Out on the street three seconds later, I called her back and got no answer. I emailed. I called again. I called my service coordinator and asked her to let her know I was trying to reach her, and while I did, I heard a beep and a boop: my phone, telling me a voicemail from the EIOD had come through without even ringing. I couldn't believe it. I imagined her, a cranky government employee buried in paperwork, adding Teeny to her naughty list just because "mom" couldn't be bothered to pick up her phone. I was nauseated and my palms were sweating. I worked myself into a nervous frenzy and sat still, phone in hand, on the sidewalk near Columbus Circle, afraid to move or even breathe lest I lose my bars and miss her call again. She finally called back two hours later. To my surprise, she was actually human. She approved a speech evaluation and visits to the developmental pediatrician. A week and another only slightly less stressful voicemail exchange later, she also approved an increase in OT and PT, and 3 hours a week of respite care. When she gets the speech evaluation, I expect her to approve speech therapy and a monthly team meeting of all of Teeny's caregivers. I expect assistive technology to be covered to some extent as well. I am surprised that this is all coming so easy for us and then I remember her diagnosis. Call it cerebellar hypoplasia, call it a non-traumatic brain injury. Or use the official term, the one with the diagnostic code, Congenital Anomaly of the Brain. Whichever you choose, they are equally horrible. You don't question a diagnosis like that. It's serious stuff.

And yet Teeny is blossoming. She does not look or act like a brain-damaged kid. She is gorgeous. Her eyes are big, her head is round. She has baby fat. Her doctors do not believe this to be genetic or degenerative in any way. They are sticking to their theory of a prenatal injury of some kind, which they say is relatively good news. And clearly, there's something to this neuroplasticity thing. With all these approvals and increases in services, there is now a stream of people in and out of our apartment. She has some kind of therapy or appointment nearly every day and some days she has two or more. She’s got a team of ladies who adore her, bring her balls and toys and spoons, who get down on the floor and play with her, stretch her, brush her, swing her, clap for her and love on her so much that Bee can't help but be jealous. I try to be home for as many of the appointments as I can so either Johnny or I can distract her. Sometimes one of us takes her to the park. One time we made cupcakes for our PT. Another time, we made frosting. But most of the time, she is glued to their side, fully a part of the therapy session. She loves the therapists just as much as Teeny does and she loves their toys even more. She's learning to sign and she wants to be brushed and swung too, and the ladies are only too happy to indulge. She works her charm on them and has managed to score a new ball, a fairy costume, and exclusive rights to a plastic piggy bank that sings and lights up when you put big plastic coins in it. "I want to play with her pig!" she says every single time I tell her it's time for OT. Which is a lot. She's also earned a lot of special Bee-time from her mama and all the other relatives who see how Teeny's burgeoning social life is affecting her. For Bee, these therapy sessions are a painful exercise in sharing. But for Teeny, they are magic. You can see growth and change from one week to the next; it’s almost unbelievable how much progress she is making. From everyone from my parents to her therapists to neighbors to colleagues I hear the same thing again and again: "This is the same baby I saw two weeks ago? No! I can't believe it. She's grown so much already! She's really changed. Look at how much she can do now!" And I know that's not just lip service. I see it too. She can containerize her toys now, she can pull out and push in. She can reach for a magnet on the fridge, grab a baby puzzle piece by the handle and then replace it where it belongs. She can lie on her side, stretch up to a high kneel, and wiggle her butt to music when she’s held in a stand. She putters around the house now with a more advanced version of her bunny-hop and has learned to climb up chair legs, our legs, anything she can put her weight on. 

This week we had her speech evaluation, conducted by a classmate of mine from high school. I was impressed with her skills, her patience, her ability to determine what about Teeny’s chirps, gurgles and gestures was or was not actual communication. She said if Teeny was being evaluated solely on speech, she probably would not qualify for services because she wasn’t that delayed, but that she would make a recommendation nevertheless based on her medical diagnosis. I was thrilled. Cerebellar hypoplasia can mean significant intellectual disability. While this has not manifested itself in Teeny so far, I live in fear of it and am hypervigilant, always on the lookout for signs that she is or is not cognitively okay. Hearing this made me more confident. I told everyone I knew that day that Teeny Wasn't That Delayed, and added find a speech therapist who will come to Harlem to my list of things to do. By this point I'd already found two unicorns -- our PT and OT. What's one more? And now I see just how clearly Teeny is communicating. She nods her head yes and shakes her head no. She furrows her brow to express confusion and puckers her lips when we say "Kiss?" When we call "Teeny!" she looks quizzically at us. She waves hello and goodbye. She claps when we say "Yay!" She's going through a phase of biting me when she's nursing, and when I say "Ouch! No! Don't bite me, Teeny!" she bursts into tears in the most heartbreakingly adorable way. She signs more and food, and her first words were up and Da-da. (It doesn't matter that da-da is for Johnny... and for me.) She's 14 months old. Not That Delayed indeed.

Physically she’s changing too. She suddenly has more hair. She’s gaining weight. After a particularly difficult phase of feverish sleeplessness, Johnny stuck his finger in her mouth and ran it along her top gums. She shrank back in discomfort. Wouldn’t you know, that little toothless wonder is turning into a piranha. She’s getting six teeth at once! So clearly, her brain is getting stimulated in many ways.

In other news, Bee is almost three. She reminds us of this every day. "Mama, I'm almost three!" She's reading a little and writing her letters very well already. Her school is play based, which I like because it encourages art and creative, imaginative play. This is good because when she comes home she wants to practice her letters with me. Her fine motor skills are improving at lightning speed just like Teeny’s. Two or three weeks ago, her capital letters were big and shaky. They are getting stronger and straighter, and she can write them smaller now. She can write her name and while she writes the letters one on top of the next, you can clearly see that it says B E E. 

She can write both upper and lower case and loves to write them over and over on the Brain Quest wipe boards we got for her a month or so ago. “Mama!” she screams. “Can you erase the Qs? Erase them! I want to write Qs!” So impressive, but on the other hand, I just can't get the kid to sit on the potty. She’s very interested in it, but won’t use it yet. She looks at it, sticks stickers on it, asks questions about it, will occasionally sit on it fully clothed. “When I’m three I will go to the bathroom and wear underwear,” she tells us. She’s got exactly two months to go. In the meantime, she puts Minnie and Mickey on the potty together and announces that they’re sharing, or better, that they're peeing on each other. Mickey and Minnie are her favorites, and she reminds us daily that she wants to get on an airplane and go see them again at Disney. We've told her that we can go back as soon as Teeny walks, so no one has a more vested interest in Teeny learning to walk than her big, mouse-loving sister Bee.

Bee is also very musical. She comes home from school singing songs I didn’t teach her, which is an odd reminder to me that she has a life beyond what I share with her and teach her myself. She sings Jingle Bells under her breath as she lights our Hanukkah candles, sings the classroom’s goodbye song to all of her stuffed animals one at a time, does the hand gestures to the Itsy Bitsy Spider over and over. She taught me a new version of Open Shut Them and came home one day shrieking On Top Of Spaghetti at the top of her lungs. We had so much fun singing it together.


 
This week marks the first time in over twenty years that I have celebrated Hanukkah at home. Last year I got a menorah as a gift and this year we bought candles for it. Unwilling to recite the Hebrew blessing which I somehow still know by heart, I gather the girls in my lap and light the candles saying the serenity prayer instead. That's about as spiritual as I can get, and I feel peaceful, solemn and serene for all of twenty seconds until Bee shrieks, "Mama where's my present? I want my present!" I am enjoying the holiday tradition, but I'm glad there's only one more night to go.

Night time has been interesting. Teeny is going through a new phase of co-sleeping, which has a domino effect on the rest of us that results in musical beds. She falls asleep in her own crib every night but by midnight, or to be more specific, by exactly two seconds after I have closed my eyes, she’s up and refusing to be put back down until I, frustrated and exhausted, lay her down with me. Instantly, she’s out cold. That’s when Bee wakes up. Because she is now going through a phase in which she refuses to stay in her bed at night, Johnny knows he's going to end up with her so she doesn't wake me and the baby. More often than not, he doesn't even bother falling asleep in our bed because Teeny’s already in there with me. But because he is too tall to sleep with Bee in her tiny toddler bed and too tired to sit up next to her until she falls back asleep, they both end up in the living room: Johnny on the couch and Bee on the loveseat, and when I invariably wake up at 5 am needing to pee, I wake them up, and that noise then wakes Teeny up. It’s hardly ideal but it's such a comedy of errors that I can laugh about it once I've had my (decaf) coffee.

Lack of sleep is challenging for any parent. Before Teeny’s diagnosis, I was already a zombie. But now that I’ve taken on Warrior Mama as my second full-time job, I am really beat. This is not good. I know that I’m putting my health at risk by not getting enough sleep. But worse than that, it makes me bitchy. I am so tired some days that I’m not thinking straight. I react with my emotions instead of my head. I walk around on the verge of tears a lot of the time. Yet the rest of the time, I’m smiling and full of joy. I still have a great life and I know it. I have two beautiful girls. Teeny is determined, adorable, loving, happy. Bee is beautiful, brilliant, creative, mischievous, affectionate. Johnny and I have two delightful daughters and a married life that is full of love. But when I’m tired, my skin, not thick to begin with, feels like cheesecloth that cannot keep anything in. I am constantly wounded by minutiae, harboring ridiculous resentments and grudges against people for things they couldn’t possibly even be aware of. I list my gratitude every day and talk about them with Johnny every night, but sometimes I am tired of being grateful. Being a mama is hard, and being a fighter is harder. I'm tired. Sometimes I want to be taken care of too.

And just when I'm about to open my mouth to whine about how bad I have it, something tragic happens like it did today in Connecticut. As one friend wrote tonight on Facebook, there are parents out there with wrapped presents hidden in a closet that their children will never open. Parents dropped their kids at school this morning never suspecting they would never see them alive again. I can't even fathom it. I left work tonight needing to hug my girls before they went to bed. I came home to them washed, bathed, and waiting for Mama. We lit the candles, opened presents, sang, and snuggled. Bee said she loved me thiiiiis much, and threw her arms out wide. Teeny threw her little hypotonic arms around my neck. I kissed four chubby, rosy,warm cheeks. I held a living, breathing, growing babe in each arm, and I didn't want to let go.