What Government Shut-down Means to a Special Needs Parent

My sweet boy turned 5 this week. As such, he is no longer eligible for services from WIC, a Federal program that provides nutrition and nutrition counseling to pregnant mothers and children under the age of 5. This is not a program for poor people. You can make $60,000 and have a child on WIC. We sought it out when N. was put on a formula that cost more than $300 a month to purchase.

So we have already found other options to help offset the high cost of N’s nutritional needs, but many of my special needs mom friends are worried. Some of their boys are tube fed. As such, they don’t supplement with formula, as we do. Formula is their child’s primary sustenance, and costs more than a thousand dollars per month. Just to eat! This does not include medical equipment or therapies or doctor visits.

Most of these moms have had to purchase their kid’s food supplies out of pocket this month while WIC is shut down. And most of these moms consider themselves middle class. They can do this for a month or two. But then what? $1000 a month for one child’s food is not sustainable. Not for anyone I know.

Then there’s Medicaid. Most people with significant disabilities are on Medicaid, again because of the massive costs of doctors, surgeries, therapies and medications. No typical American family can afford a special needs child. And yet, we all want to do everything we can to keep our kids healthy.

Medicaid comes from the state and coverage varies greatly, depending on where you live. But the states get money from the Fed to help with this. So how long does this shut-down drag on before my child’s services are cut?

I know Federal workers are hurting. It is shameful to ask these hard-working people to show up every day as their bills pile up. But they aren’t the only ones. A lot of people in this country are suffering for a political stunt. And some of those are vulnerable children.

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My election day story

All my life I’ve been a blue girl in a red state. I’m used to not having my candidate win. Like ever. I’m down with it. Nevertheless, she persists.

I am fortunate that our schools close on election day, which means I’m off and so are my children. A little mini-holiday mid-week is always welcome. So after I cast my ballot full of candidates who will not win, I take my little guy out to celebrate the fact that I am allowed to be a voice of dissent, even if no one around me listens. I’m feeling all Mighty Girl and #metooish.

We head to a local, spacious breakfast place that is wheelchair friendly. We order and await our pancakes.

While I am playing with N and reading the children’s menu to him a group of old white men are seated next to us. They have obviously just come from the polls as well, as they are discussing the election.

“Wouldn’t it be something if Pelosi lost her seat?” they guffaw. “Lord, wouldn’t that put liberals in their place?”

They obviously haven’t heard there is a blue wave coming. But then, the blue wave isn’t coming to South Carolina. Not any time soon.

While I eat my meal and coax N to feed himself (because he can but he doesn’t like to when Mama’s around), I think about how I just voted in hopes of a better future for him. In hopes of not having to be afraid he will lose his healthcare, or that he will be mocked by someone as senior as the president himself.

At the next table over, I hear one man tell a joke that would once have been considered old Southern humor, but today would be judged as racist. And yet, in the next breath he clearly speaks of an African American pastor whom he once served with, and it is obvious he deeply respected this man. He doesn’t get it, I think.

Between coffee refills, I judge these men in my mind.

I’ll bet they want to cut Medicaid to my sweet boy here, I think. I’ll bet they think that they shouldn’t pay taxes for education since they have no kids in school. (Money that pays my salary). I’ll bet they support the bullying, fear-mongering president we have in office who mocked a disabled person and justifies putting kids in cages.

They are probably judging us as well. “Bet that kid costs the taxpayers a bundle.” (They do not say this. This is what I think they might say.)

I give N a napkin to wipe his mouth and take a last gulp of lukewarm coffee. I look for my bill. Wasn’t it there a minute ago?

But as I stand to see if it dropped to the floor, the man who had made the joke addresses me.

“Miss,” he says. “I hope you don’t find this offensive, but I asked the waitress to bring me your bill.”

I am not good in surprise situations. I stand there like a deer in headlights.

Finally, “Oh no, that isn’t necessary. I’ve got it,” I say. Fake smile.

But his eyes meet mine and I realize that though we have different world views, he is not the monster I created.

I think all kinds of things right then. Does he feel sorry for me? Does he think I’d bring my kid to a restaurant I couldn’t afford? Does he think I’m a snowflake who can’t pay my bills?

Then he just says, “Please. I just need to do something kind today and you looked to me like a good person.”

All this time I was judging him, he thought I looked like a good person?

“Thank you,” I say. “God bless you.”

I tell N to wave and he flashes the man one of his million dollar smiles. I go home feeling humbled.

If we all stopped listening to the propaganda coming from both sides. If we stopped making assumptions about what “the other side” thinks. If we just did something kind for someone else each day for no reason at all. If we did that, we would still have disagreements and different world views, but our country would not be in danger. And we would once again be a nation indivisible.

When a simple dinner out isn’t.

If you are a special needs mom you know, success is 95% planning and 5% luck. I have never been particularly good at the former but I am being trained by my now 4 year old.

My older son turned 14 the other day. His dad was out of town so we were not having a big celebration that weekend but it was his birthday and I wanted him to at least be able to pick what we were having for dinner. He picked an Italian joint owned by a guy from New York who makes the most amazing pizza.

The thing about this restaurant though is, it’s a nice place– white table clothes, Frank Sinatra’s music, etc. Usually our modus operindi is to pick up a couple of pies on Friday night and eat at home, cause white table cloths aren’t really compatible with our current lifestyle. But V specifically says, “But I want to go in and actually eat there.”

So I pick the boys up from school and head down to the restaurant– which at this time of day is a 30 minute drive due to the 4,000 other cars on Pelham Road at 5:30. That’s when I realize that the handicapped placard is in the car with my husband in another state.

At this point, I normally would have gone home and called for delivery. But it was V’s birthday.

But it’s more than that. See special needs parents also suffer a special guilt regarding their less needy children. Everything in our lives is always about N. His doctor appointments, his therapies, keeping by his schedule. Family vacations that end up with a trip to the ER. My older son has never expressed resentment toward his younger brother, but I have noticed clenched teeth a time or two when we couldn’t do something because of N. So I was determined to go through with the white table cloth pizza dinner.

The parking lot is packed. I circle a few times because without the handicapped sign I need a spot on the far left so that I can make sure no one parks too close and keeps me from being able to get the wheelchair in. ( By the way, I have had to do this several times when I DID have the handicapped sign because selfish people without one decided it would be ok to park in the blue spaces. It is not ok. For us, it is less about being close to the door and more about safety.)

I pull to the far right of the space, get out the wheelchair and line it up with N’s car seat and make the transfer. Then we have to navigate the busy parking lot to find a place without curb so that we can get up on to the sidewalk.

Even though we make it inside before dating hour, the restaurant is busy and N does not want to wait. He keeps taking the brake off his wheelchair and attempts to maneuver around the waiting area coming far too close to the hostesses feet. I’m trying to hold on to the handle and he starts protesting loudly. ( My son doesn’t speak, but he makes his desires known).

My older son, who suffers from anxiety, is paceing in circles, which takes up even more space.

A family comes in and a little girl, younger than N, points at him and proclaims, “Baby!” The mom looks embarrassed and hustles her away. I want to tell her not to be embarrassed. The kid doesn’t know better. I want to introduce the kid and mom to my son to show them not to be nervous around people in wheelchairs, but I don’t. There is a time for advocacy and a time to just be with my family. I decide this is the latter.

We are finally ushered to a table and order drinks. But the food is a long time coming. I pull out teddy grahams and feed N olives off my salad but he is hungry and is making loud noises. When his food comes he offers an excited “mmm!” And even though he knows how to hold a spoon speghetti noodles are difficult so I cut them up and spoon them into his mouth. V is contentedly tearing into his pizza.

So I did it. I got us to the birthday choice and everyone is eating, except me. Every time I start in on mine, N takes my hand and puts the spoon in it. I am not fast enough.

V starts to tell me something funny he saw online. It is not easy to engage my teenage boy in conversation so I focus on him and try to keep it going. Then I realize N has started grabbing noodles and shoveling them into his mouth with his fist. They are all over his face, the floor, etc.

I wipe his face and offer his some water in the styrofoam kids cup they brought him. I hold the straw to his mouth while I tabulate the tip and sign the bill.

N starts to make a loud shouting sound. “Hush, hon. We’ll be done soon.” He keeps on. When I gather our things to go I realize he straw has gone through the styrofoam and N, his wheelchair, and the surrounding area are covered in a pool of water. Well, he tried to tell me. I think about going back and adding on more tip as I assess the huge mess we have left, but my main instinct is to get out of there as quickly as possible.

Too bad you can’t get wine in a to go cup.

Technology hacks that keep me sane as a special needs mom

And they probably help lots of working mothers.

• Grocery pickup/delivery: N actually likes shopping, seeing new things, watching people, but when I pick him up from day care at 5:30 he’s usually done for the day. Also my back problems are making it an increasing chore to get him in and out more than necessary. So now I can go online, order my groceries, and pick the up for free on my way home from work. So far I have picked up from Walmart about 5 times. They have always gotten it right and have it ready when I arrive. Downsides are that you can’t get hot items, such as rotisserie chickens, not all Walmart’s participate and at least with ours you usually have to schedule the night before. So if I don’t have it that together the night before, I also have the option of grocery delivery. I have used Publix three or four times. You do pay extra for this service– a percentage of your bill plus optional tip, but some weeks it’s totally worth it. I haven’t always been happy with my meat, but that’s the only complaint I have.
• Restaurant delivery: Oh the olden days (2016) when the only food I could get delivered was pizza or Chinese. Today I can choose from 40 local restaurants on my BiteSquad app and tell it what time I want the food to arrive. In Greenville, in addition to BiteSquad, we also have GrubHub and Waitr, which expand my choices but I haven’t tried them yet. With BiteSquad you pay between $2-5 delivery fee (plus optional tip) depending on how far the restaurant is from your home. You can watch the progress on your phone– is my order received, cooking, being delivered, etc with an ETA that is usually pessimistic if not accurate. One time during a snow day the restaurant I ordered from had failed to take itself offline, but a rep from BiteSquad called me herself to apologize and gave me a full refund. It is so great to come home from a long day at work and someone else has put dinner on the table.
• Facebook groups: Yes, I know Facebooks image is somewhat tarnished right now and there are times when I have to take a break from all the political banter. But I won’t stay away long because of the numerous online friendships I have with other parents in my situation. I am in groups for my children’s schools, for a local group to help special needs families of all stripes, and a parent group for kids with Ns condition that has moms from all over the world. If this had happened 10 years ago, I would probably only have met 1 or 2 boys with L1Cam as the condition is so rare. But thanks to my group I can see about 100 boys at different stages, ask advice from more experienced moms and offer support to those newly diagnosed. We even hand down equipment to each other and provide meals when someone is in the hospital. The group is truly a blessing to me.
• Phone calendar: With all the doctor appointments going on I would truly be lost without my digital calendar and doctors offices that send me text reminders.

These are some of the things that keep me sane. I’d love to hear some new ideas from you!

Two steps forward, one step back

N turned 4 this week. It is amazing to think back on how much he has accomplished. He’s gone from not being able to eat or keep food down to holding his own spoon and cup and weighing in the 26th percentile for his age. He’s gone from not holding up his head to crawling. But not walking.

He wants to walk. He tries so hard and laughs when we put his braces on because he knows he’s going to get to be upright. But progress on this front has been minimal.

Two days before his birthday we got some indication why. One of his hips is 65 percent dislocated. This is apparently pretty common in children with cerebral palsy because there is so little muscle tone to hold things in place and the bones don’t grow properly if they aren’t upright often enough. This might explain why when we stand him up he always leans heavily to one side.

And this is what to me is one of the hardest things about being a special needs parent: that progress is not always permanent. Typical children learn to walk one day, the next day there is no stopping them. N might learn something one day, then the next day it is gone. Being in a cast from the waist down for a month will mean loss of muscle tone and muscle memory and all those things he struggles so hard every day to gain. It took him three years to crawl. Will he forget in one month?

Yes, I know that there is a chance that correcting his hip may allow him to finally balance and learn to take those first steps. But no one sounds too encouraging on that front. This past week when I’ve been doing this exercises with him I feel myself thinking in the back of my mind, “What’s the point? Why teach him this when he will have to sit still for a month and lose it all?”

The other thing that is so difficult is this: you are always waiting for the next bad news. The first year of N’s life was like being adrift at sea. Each time we thought we had our heads above water a new wave of bad news would knock us down. We were just surviving. We have been fortunate enough to have three years of relatively smooth sailing. But even when things were good and progressing, underneath the surface we were holding our breath, waiting for the next thing that would send us to the hospital. And here it is.

But this is the way to do it. It is not an emergency. As our husband and I are both educators, and he doesn’t seem to have any pain, we are able to schedule the surgery for this summer. We will be prepared with our plans in place and our medical and educational team on board. This will not be like that first year when we did not know what we were facing and felt so helpless to protect this fragile little creature who was suddenly in our charge. This is what I keep telling myself.

I know my son now. I know his likes, dislikes. I know what motivates him, what comforts him. And most of all, I know how strong he is. And that is what keeps me strong for him.

10 Things You DON’T Have to Worry About as an L1Cam Mom

Since everyone is doing Thankfulness Challenges this season, I thought I’d try a similar spin. Yes, L1Cam gives us a lot to worry about, and I’m a worrier. My older son says, “Mom, you worry too much.” I tell him, “Yes, I’m your mom. It’s my job to worry about you, and I am really good at it!”
Still, there are some things I worried or will worry about with my older son that I will never have to face with N. Here is a partial list.
1. Running away from me in the parking lot. Every time we go out to a store I see a mom tugging on some little person’s arm to prevent said little person from darting out in front of a 10-ton pickup truck. N can only go where I push him, so no worries there.
2. Him actually running away from home. He might get mad, but he’s not going anywhere I don’t take him. No worries.
3. Finding a parking space. It’s such a little thing, but when you’ve got to find room to maneuver your child from a car seat into a huge piece of equipment without getting run down by a 10-ton pickup truck (yes, I those appear in my psyche quite a lot), you are thankful for that little permit with the androgynous blue person so that you can snag a big space by the door. I also don’t worry about the people who look at me sideways because I’m using said permit for my “baby in a stroller.” You put a child through three brain surgeries, make sure he gets 3 different kinds of therapy per week and is in an upright position at least 1 hour per day, puree all his food, and suffer constant back pain from lifting him, you deserve the dang parking space.
4. Bullies. I do worry about people making fun of N or hurting his feelings by leaving him out, but because he requires pretty much constant supervision, I doubt he would become a classic bully target.
5. Teaching him to drive. Oh, terrifying day when my older son will get behind the wheel of a car. The mechanics of it, the freedom he will have at that point and the emotional turmoil that will ensue. N will be tucked in his 5-point harness. No worries there.
6. Drugs and alcohol. Well, there was that one episode of “Speechless” where J.J.’s aid lets him drink, but I kind of doubt N will be going to any high school parties.
7. Saving for college. We have been dutifully tucking away money in a fund since our older son was born and though we thought we had it covered, the closer we get to the actual time to fly the nest, the more daunting the task seems. I do worry about saving money for N to live on as an adult, but I don’t think he’s going to need $60,000 a year plus transportation.
8. Grades and test scores. The stress young people go through these days just getting in to a college is insane. My older son is already taking career assessments in middle school and has been standardize testing since he was 7. N also has been tested a lot, mostly to prove that yes, he still needs special education services. We have goals we work on through his IEP and we celebrate the successes. But he will sit through a 4-hour high-stakes bubble test over my dead body.
9. Getting a girl pregnant. N is quite the ladies man, but boys with L1 are sterile. Case closed.
10. That he will grow up and leave me all alone. I will never be an empty nester. My older son tells me alternately that he is planning to move to Canada or Japan. But I will always have my little buddy to watch “Wheel of Fortune” and read books and give hugs and to listen to my running commentary of my life. At least, I will have him until one of us goes to be with God. And then I truly will have nothing left to worry about.

When bad news helped me heal

Here we are again in September, the three year anniversary of when I started this blog. It is also hydrocephalus awareness month. Hydrocephalus is the most dangerous symptom of N’s condition, and the first with which he was diagnosed.

Hydrocephalus is a condition where there is too much build up of cerebral fluid on the brain. The reasons for this excess build up are numerous. Many times premature babies get it, or babies who suffer strokes in utero. People can develop it at any time due to a head injury. Older people often develop a form of hydrocephalus that mimics Alzheimers disease. Sometimes the reason is not known, but for me, that answer used to be infuriating.

N was diagnosed with hydrocephalus at 1 day old. He had his shunt placed at three weeks old and had two revisions to fix issues with it in his first eight months of life. All this time I wanted to know–why did this happen to my baby?

I am not one to accept things as Fate or “the will of God.” Things happen for a reason. My mind needs to know those reasons. For the first nine months of N’s life I spent waking hours in a loop of questions. Was it the heart burn medication I took during pregnancy? Did I inhale paint fumes when we were painting his nursery? Did sleeping on my side put too much pressure on his developing head? I knew I hadn’t had alcohol, smoked or taken anything the doctor had not approved. Still, somehow I was convinced I had somehow caused my baby’s condition.

Then there was the other cycle of questions revolving not around the past but the future. Would he walk and talk? Would he have a “normal” life? Would he have to have more surgeries? I had met several young people with hydrocephalus who were intelligent, emotionally stable and able to physically do what they pleased. I had also seen photos of people with hydrocephalus who did nothing but lay in a bed. Which would it be? Would I have to quit my job to care for my child or would he grow up and take care of me?

The tell-tale sign to the answers to the questions for N was the phrase “adducted thumbs.” Most small babies keep their hands fisted, but as they become more alert, they begin to open them up and explore the world. At six months, N still kept his thumbs tucked. The neurosurgeon noted this at an appointment.

“What does that mean,” I asked?
“Possibly nothing,” he answered. Don’t you just love it when doctors answer you like that?

Of course, I went home and googled “hydrocephalus” plus “adducted thumbs.” I found the blog of a woman whose son had a rare genetic disease called L1 Cam syndrome. I reached out to her and said I suspected my son had the same thing. She invited me to a Facebook group of parents of boys with this condition. At this point, I insisted on genetic testing.

I had hoped the testing would allay my fears. “No, your son doesn’t have that horrible disease. Calm down. He’ll just need a little extra help meeting milestones.” But that is not the news I received.

The geneticist, whom I happened to know well –we sing in church choir together– called me as soon as the results were in. N did have L1 Cam, also known as X-linked hydrocephalus. “X-linked” because it comes from the x chromosome, the mom. I had tested positive as a carrier. This mean there was a 50 percent chance that any male child I had would have L1 Cam.

Of course this was tough news to handle. Of course, it is not what I wanted to hear him say. But somehow, it gave me a strange peace.

All of my questions were answered now. I did “give” this faulty gene to my son, but there was nothing I did to cause that and no way I could have known I was a carrier.

Also, I now had a better picture now of what N’s life would be like. A grieving process began. Sometimes I’m not sure that process will ever fully end, but now I am grieving something tangible, not just letting my mind spin about things that might or might not be. And through grieving, there is also healing.

Because we have a name for this, I am connected with the right doctors and therapists. I am connected with other parents whose boys have L1 Cam so that I can see the journey more fully. What does this look like at 5 years old and 15 years old?

Some people have said to me that they’d rather not know if their kid had a disease like L1 Cam. They would rather keep believing “typical” was something to grasp for. But for me, having a diagnosis for N has been part of the healing process. It helps me be more present in the moment for him instead of worrying so much about my past and his future. It is not an easy journey, but being able to see a road in front of me instead of a cliff face, makes it doable.

I still don’t know for sure all the things N will or won’t be able to achieve. I still don’t know when or if his health will take a sudden dip for the worse and rock our world. But I feel like I have as good a picture of what’s ahead as the parent of any “typical” child. Because let’s face it, none of us know the joys and sorrows our children will face and we cannot protect them from everything their future holds. We can only let them know that we love them for who they are and that we will be there on the journey with them.