Life With Miles

Sometimes People Get It

Last week I wrote at great length, though not exhaustively, about the challenges we face as a family and gave you a run-down of what Miles has been through in his first four years. I got a lot of powerful and positive feedback, which I appreciate so much. Some people even stepped forward and shared some of their stories with me, which I think is just fantastic. If you ever want to share with me, or contribute as a guest blogger, feel free to reach out.

This week is to be a little more upbeat. You’re welcome. 🙂

I wrote last week about how hard it was to make friends. We had recently moved away from my favorite place I’ve ever lived, near family and surrounded by a community of close friends. On top of that,  I wasn’t working and cash flow was at an all time low, so going out and meeting people was just not something I was excited about. Plus, I was having all these issues and feelings and worry and strife, so I didn’t want to lay that all out there for every new person to have to deal with. Nothing says “You really don’t want to be my friend” more than being a needy and emotionally frail person-with-too-many-problems.

I did see people occasionally – we had “Birth to Three” (or early intervention) therapists come to the house a few times a week, and they were nice and stuff, and I really liked a couple of them very much, but they were professionals and, you know, boundaries and stuff.

At one point I tried making friends with a woman down the street who had recently moved in. She had a child a year or so younger than Verity and another child about a year older than Duncan and Miles. I am not a diagnostic professional, but the son was non-verbal and often in a stroller he was too big for and did a lot of yelling. I saw an opportunity to relate to another mother who might be going through some of the same issues I had been facing. I shared with her some of what I had learned while we were waiting for the bus one day and soon she became everything I was afraid I’d become. She needed me for everything you could possibly think of from “could you find me a lawyer” to “I’m bleeding, please come over and be with my kids.”

It turned out Verity was suddenly old enough to walk herself home from the bus stop. Also, I stopped answering the phone. It was too much. They have since moved.

When Miles turned 3, he aged out of the Birth to Three program, which meant that he was eligible for the public preschool program. I honestly didn’t know how much this would heal me.

The program is a short-day (2.5 hour) program which is “reverse-mainstream.” Miles was referred to the program by his Birth to Three service coordinator. The teachers came to meet him, he was evaluated, and we had a big meeting about his eligibility and services he would receive. Duncan, as his twin, was automatically accepted into the school year program as a “model peer.” Miles took the bus to school in July after he turned 3 and then, because Duncan was not eligible for transportation, I began driving both of them in the fall.

Through the preschool program, I met parents of other kids who, though not quite like mine, had their own stuff going on. I got to bring the boys to birthday parties where I could see how they interact with the other children in the class. The children treated Miles as though he was everyone’s baby brother. Guiding him with an arm around his back, protecting him, and including him in whatever they were doing. Usually, Miles wasn’t quite at the same level as the other children, but they never seemed to mind, happily playing near him and asking him questions.

I met other parents at drop-off and pick-up. Though our stories weren’t the same, we shared some of the same pain of lost expectations and the realities of living in the Realm of the Unknown.

I met a mom whose child has some of the same kinds of seizures Miles has. She invited me to a monthly Epilepsy support group, so we started attending monthly. We carpool and laugh and rail about this and that, and then we laugh some more. I cannot say enough good things about the group itself — just having someone who relates, even just a little, to what you’re experiencing, or someone who has new ideas, or who has tried things you haven’t even considered, is like taking a weight off. Side note: the Epilepsy Foundation is pretty great. If you or someone you know has epilepsy, I highly recommend them as a resource.

I met a mom who has become one of our most vocal cheerleaders. I think she could write the book on advocating, and she always lets me know when she finds something cool (and cheap or free!) that the kids would like. Yesterday, on her recommendation, we took the children to a museum which has dedicated Accessibility Days once per month. On those days, families of children with disabilities are admitted for free. We took all three kids and they had a fantastic time! Miles tooled around in his wheelchair and showed me all kinds of tricks he’s learning; Duncan loved each new place more than the last, until he found his dream exhibit – the energy lab, where he played with water power and got soaking wet. Although she was kind of big for the museum, Verity had a great time anyway, trying stuff out, climbing where she could climb, and making friends with preschoolers. This mom also took Duncan on Thursday while I went to the endocrinologist with Miles.

I met a  mom whose daughter is, I’m pretty sure, going to marry Duncan when they get older. It’d be okay with me because I love them – both mom and child. When she has to leave school early for some reason, Duncan cries. They always want to play together outside after school and then, inevitably, one of them tries to climb into the other’s car to go off together.

I met a mom who is a special education attorney. I have yet to ask her about anything that has surprised her or that she didn’t have an answer for. And just when I think I’ve asked for too much free advice, she approaches me with follow-up questions and offers of assistance.

The teaching and therapeutic staff at the preschool is just wonderful. I have never felt like they were on anybody’s side but Miles’. The few times I’ve had to make special requests, they listened well and did everything they could to meet those requests.

So although I don’t have my amazing family right next door, or my “village” of friends and neighbors we had to move away from, I am finally building a community around myself and my family. I have missed that; it has truly been too long.

 


 

NOTE: Thank you so much for reading! I want you to know that, though I strive to publish every week, I will be taking this week off. School is out for summer, there’s a week before camp starts, and Miles is having surgery this week. Sometimes I just have to be realistic.

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Life With Miles

Special Needs

If you know me, which you probably do because you’re reading this, you know that it is not always easy for me to talk about things that are difficult, particularly in an open forum or for any length of time. I put humor into it, or I slap on a happy ending, which may not fit into the narrative I have constructed. I use humor because I value it so much – a life without laughter is not a life in which I want to partake. I slap on a happy ending because, frankly, I always try to look on the bright side. In some instances, however, I realize that this may actually be a disservice to myself and to those who are trying to understand what it is my family and I are going through.

With that in mind, I am going to attempt to write about what life is like for us in a way that is a little more representative of how it actually is, without the silver lining.

DISCLAIMER: As of the writing of this blog, it is my understanding that the terms for “special needs” and “neurologically typical” children are the most accepted terms to use. It is not meant to imply that a neurologically typical, or “typical” child is not unique or special in their own right, but simply that they developed more or less along a predictable and established (or “typical”) timeline and that they are about on par with their peers. Additionally, a “typical” child likely does not have medical needs and specialists beyond those of their peers. My personal definition of a child with “special needs” is: one who needs extra intervention on a regular basis just to navigate their home/the world/their school/their life.

A woman I was talking to once stated to me (sitting there with Miles, in his wheelchair,) that she didn’t like the term “special needs” because “don’t all children have their own special needs?” I was momentarily speechless, but I eventually said “Sure, all children are unique, but to me the term ‘special needs’ means something else.” I remember thinking “This is hard enough – do you have to take my adjective away?”

(A note of caution: adjectives are descriptors we use to help someone understand what we are talking about. We must be wary of the weaponized adjective: The Label. I try hard not to use labels because they imply a bias. As Ian has said: we need to use the words to help tell a story–not in place of a story.  It can be a fine line, but one we must strive to navigate with as much grace as Philippe Petit on the high wire.)

Even in the optimal situations, being a parent is difficult. Children are not trainable like puppies and they never behave as you might want or need them to… Make a list of things you need to accomplish during nap time and it’ll all but guarantee that there will be no naps. Your child only eats hot dogs? Buy the big case at Costco and he will insist that he doesn’t like them any more and only wants to eat macaroni and cheese. Need to be on time? She flushed her shoe down the toilet. They become preteens and then teenagers and grow moody and secretive and then they leave home and you have to hope and trust you prepared them well enough.

Right now I have a typical preteen and a typical three-year-old. Each of them is able to make me want to tear out my hair on a daily basis. If I had a dollar for every time I repeated something I just said ten seconds before, I would be a rich lady indeed.

And if that’s not enough for a parent, there are activities, sports, music, after school clubs, and everything. And everything costs money! Did you know children have to eat every single day? Not just the one time, either! They devour snacks like fiends and then, if you’re lucky, they eat food at mealtimes too. And if you want to put on a show and pretend they’re hungry dinosaurs eating tiny broccoli trees, they may even get an occasional vegetable in. And you have to cook it all, even if you know they won’t eat it, because they might actually eat that one time and if there isn’t enough they’ll let you know exactly how hunnnnngryyyyyy they are.

And you love them more than you ever believed it was possible to love anything ever. It even hurts sometimes.

Add into that mix a third child. This child is sweet and funny and wonderful, just like the other two are, but the frustrations he brings are different. They involve appointments, meetings, advocation, equipment, uncertainties, and worry.

We see two therapists a week and he has a bunch of specialists. Some months are busier than others. June/July is going to be particularly busy because we are going back to a developmental pediatrician and because most of the specialists see us on the same 6-month rotation. I have to find ways to occupy the boys – because Duncan always has to come too, and sometimes we have to bring Verity as well – through all the waiting otherwise they start going through all the drawers in the doctor’s offices.  Oh! And parking! I have to try to find a handicap spot so that I can take the wheelchair out and get Miles into it without much hassle. Sometimes I can’t find a handicap-designated spot and the building where we go for most of our appointments has a parking lot designed for compact cars so I usually end up parking our van like a jerk just to get the wheelchair out and hope that nobody blocks my ability to get it back in.

Miles has an ophthalmologist because his eyes took a long time to mature and it’s hard to tell if he has problems with vision. His next appointment is in July.

He had an infant nutritionist because he needed to be on special high-calorie formula so he would gain weight, and who helped us navigate some high-calorie first foods.

He has an ENT and audiologist because he doesn’t reliably respond to his name or to sounds and it was feared he had hearing loss. He ended up having several behavioral hearing tests before he had to be sedated and have brain analytics done. His brain responds, but he doesn’t always, and we don’t know why.

He has a urologist because he had a urinary tract infection when he was just a few weeks old AND because he had to have a surgical bilateral inguinal hernia repair at four months old AND because he has had to have three surgeries on his penis due to hypospadias. He has had to have testosterone injections prior to each hypospadia repair, except for the one next week, which will hopefully be his last.

He has a neurologist because when he was one year old he had a febrile tonic-clonic (or grand mal) seizure which lasted over 25 minutes and which caused him to “code” in the ER. I watched as they performed CPR, applied paddles, and injected his heart with epinephrine. As it was happening I started trying to figure out how to tell Ian that I watched our son die.

He has a geneticist because, once he came out of that horrifying scene, the doctors wanted to try to figure out what the heck happened and to find an explanation for his phenotype.

He has an endocrinologist because, during that seizure his blood sugar was low and he was consistently unable to get his little body on the growth chart. (Except his head. That was always 50th percentile.) We will see her on Thursday.

He has a gastroenterologist because, at my sister-in-law Llama’s diligent suggestion and my advocation, he was screened for celiac disease and lo and behold, we found it.

He has an orthopedist because he turned two and wasn’t walking. He is seen every six months still. We go back in two weeks and I am excited to see if anything changes now that Miles can cross a room on foot.

He has an epileptologist because about nine months ago he started suddenly losing focus in his eyes and dropping his head, sometimes banging it. Hard. or he would just stare off for several seconds at a time. In January we had an overnight electroencephalogram (EEG) and it showed he was having hundreds of seizures, both absence and atonic every single day. He was diagnosed with Epilepsy.

He has a developmental pediatrician, who is helping us try to figure out the best way to meet him where he is and help him learn. 

We had a hematologist because Miles had chronic anemia, requiring re-admission to the NICU, two transfusions during that time, and then another transfusion right before the hernia surgery mentioned above. Also because his white blood cell count was elevated and remained elevated for several months.

We had a cardiologist because he was born with two holes in his heart. Thankfully, they appear to have closed and we have been discharged from cardiology.

He has weekly speech therapy, both in school and as outpatient, to try and find ways to communicate with him.

He has an hour of physical therapy at school every week and a half hour every other week as outpatient.

He has occupational therapy weekly at school and every other week as outpatient to try to gain dexterity and improve functionality in his fine motor skills.

He has a soft helmet he wears because, despite ten doses of medication every day, he still has dozens of atonic (drop) seizures every day. Mostly, the helmet keeps him safe, but now that it’s summer, golly he heats up good. 

SmilesyHelmet
Cutie in a helmet

When he outgrew a stroller, we got him a wheelchair so that I don’t have to carry his 33 pound body everywhere. We chose a wheelchair instead of a special stroller because we wanted him to learn to move around in it on his own. He’s getting pretty good.

12-22-16Wheelchair
Cutie in a wheelchair
When he outgrew his crib, we got nervous that he was going to fall out, so I put him in a pack and play to sleep. He *did* fall out of that. Onto his head.  We were able to get a hospital bed with netting to keep him safe at night. It is entirely white, giving it an impersonal and sterile feeling. I change the white sheets a lot because I can see everything on those things.

As he continues to grow, I can’t help but think: if we are lucky, he will grow up. He will likely not live an independent life. He will grow out of the cute small child phase. He will hit puberty and may be very confused about what is happening. Will he learn to shave himself? Will he ever hold a job? Will he talk to me? Can we have a conversation? When he was a baby in the NICU I consoled myself by dreaming of the future time when I could tell him the story of his harrowing newborn period and he could take some pride in being born small but becoming the soccer star / computer programmer / whatever the heck he wants to be.

On holidays or even regular days Ian and I often discuss the possibility that we are unlucky. How many more holidays do we get? Is it possible to capture the moment of hearing his giggle, of seeing his wonder, of smelling his wee head, so that we can relive it when we don’t have it any more? As I write, he is asleep in his bed. I can see him in the video monitor sprawled out on the mattress trying to keep cool on this hot night. I want to go in and scoop him up and hold him close to me as he sleeps, although I know it would be unbearably hot. Moments like these I just yearn to pause time. I ache.

sleepingHot
Sleeping and hot
Special needs for us means all of this stuff. It means I can’t work a typical job because I have a fantastic balancing act to perform on a daily basis. Starting friendships, a super-power of mine, has become incredibly difficult because I find I can no longer relate to others as well, or rather I don’t know that they can relate to me. Touching upon all of the aspects of caring for Miles, as I have here, seems daunting to think of all at once, but it’s always there, all at once. Every day. Parenting without special needs is a difficult job. Everyone has their story, their past, their pain. This is a peek into ours.

 

 

 

 

 

Life With Miles

Meet Milesy

This week I have started writing at least half a dozen posts and none of them were right. I haven’t been quite in the zone for going into the details of the NICU. Then, this weekend, I had the opportunity to spend a lot of time with just Miles, and I realized that HE is what I want to write about. I want you to know Miles, who he is now, not just the sum of his history and what we as parents have gone through. So here we go: all that I can think of to tell you about this wonderful, sweet, amazing little guy. I will include some of the medical stuff, but will avoid going deep into it because although it’s all a part of his life, it is not all of who he is.

Miles is funny. Laughter is all it takes to get him to laugh. He wants to be in on the joke.  The laughter you prompt him with might be fake, aimed at the singular goal of getting him going, but once he starts going you will find yourself in the most fantastic feedback loop.  He responds amazingly well to his bedtime ticklefest and sometimes will laugh when we have no idea why. He particularly enjoys spotting Elmo and Cookie Monster in unexpected places and delights in the picture of Louis Armstrong at Uncle Bill’s house.

Miles is sweet. Apropos of nothing he will climb up on me, stick his thumb in his mouth, and snuggle up. He will find something the dog likes to chew on (whether an approved chew toy or not) and follow the dog (“Sprocket”), arm outstretched, trying to give the object to him. Sprocket is quite patient with him, sometimes taking it and chewing, sometimes taking it and putting it down, and sometimes just turning his head and walking away. Miles, determined to share, will follow Sprocket to his next destination and keep trying. He has also taken to feeding me his snacks, which is just delightful. He gets a look of concentration on his face, aims for the mouth (my mouth) and goes for it.

Miles is determined. Whether he’s trying to feed the dog or reach an object, he will find a way. We often say he has Go-Go-Gadget Arms. For example, at the dinner table, we may wonder where our forks have disappeared to. Miles will be sitting there grinning, trying to use all the forks his little hand can hold to pick up his food. He has discovered a way to move his high chair so he can get to whatever he is lacking.

 

Miles is able. He may not use words to communicate, but he can tell you with clarity what he wants, whether he likes something or not, and where he wants to go.  If it is too far to walk on foot, he will use his knees to walk or if he’s in his wheelchair, will propel his wheels by himself. When I take him out of the bathtub, he reeeeeeeaches his leg back, trying to hook the side of the tub with his foot. When we went to a birthday party at a play gym, he made it absolutely clear that under no circumstances was he to play anywhere but the ball pit. 

Miles is curious. He will take the thing. He will lift it, turn it, mouth it, try to open it, bang it on the other thing, pull it out, push it in, or stack it on top. He loves connecting duplos and figuring out how the train tracks go together. He enjoys the sounds that dumping out the bin makes and may even put some of the things back in, until something else piques his interest. Much to Duncan’s chagrin, he wants to see exactly what is going on with whatever Duncan is doing. This often results in a crash of some sort, and two incredibly different sets of emotions.

Miles is happy. He will hum as he plays. Even when he has an atonic (“drop”) seizure he will go right back to playing and vocalizing as soon as he recovers, which is usually rather quick. Sometimes it seems he gets more upset when we comfort him after a particularly nasty bonk because he wants to get back to playing.

Miles is amicable. He will go on several errands, in and out of the car, his wheelchair, a cart, whatever, and – as long as he’s well-fed – be happy just being.  In the car, he doesn’t complain when I want to listen to NPR and he likes all the same music as I do. He loves music. In his rare times of distress, a little bouncing and singing goes an awful long way.

AppointmentTime
Third appointment of the day: Time to see Miss Amy for speech therapy!
Miles EATS. His celiac disease may restrict him to a gluten-free diet, but otherwise, this kid will basically eat anything.

SmilesyPasta
The messier the better!
Miles is ambitious. He will crawl up the IKEA shelves if they don’t have toys on top. (Frankly, he may try even if they do…) We had to get a special safety bed because he climbs on everything without fear. One night, fearing he would fall out of his crib, we tried a toddler bed. We watched on the monitor as he climbed out, got up on Duncan’s bed, and climbed across Duncan’s head in an effort to get to the curtains so he could play with them.

Miles is a miracle. Three separate times in my life – while pregnant, when he was a neonate, and when he was 1 year old, I thought I would lose him. Right before he turned two we got a diagnosis that made us believe that his time with us would be short. He keeps defying odds and expectations. As his epileptologist put it “Miles didn’t read the book. He doesn’t follow the rules.” As my sister-in-law Carin put it “Miles doesn’t know what his diagnosis is or what it’s supposed to mean. He’s just being Miles and doing Miles things.”

Miles is a life saver. I mean this in the most literal way it is possible to mean anything. Because of Miles’ major status seizure when he was one, he acquired many of the specialists he has now. One of them was a geneticist. Because of Dr. Zhang I learned that he has a rare genetic mutation in the BRCA1 gene, which increases the chance of developing breast and ovarian cancer in women. I was able to take steps via preventative surgeries to reduce those risks so they are now practically non-existent.  Additionally, this past summer in a search to find out why he wasn’t gaining weight or height, and prompted by Auntie Llama’s vigilant suggestions,  Miles was tested for and diagnosed with Celiac Disease, which is, it turns out, also genetic. A few months later I brought it up with my doctor and found out I was also afflicted.  Duncan and Verity also have been tested and carry the genetic marker, but are not diagnosed. They may never develop it, but now we know to watch for both that and its best pal, Type 1 diabetes.

Miles is a natural educator. He has taught me so much about what it is to be a mother, a person, a patient. Like many young people, I put far too much stock in what other people thought of me. This past year I was surprised to learn that I just didn’t care any more. I am doing everything I can and yes, sometimes I may fall short, but I have learned much of what is truly important, what just looks important, and what I can control.

Finally, Miles is challenging. He has had four surgeries and is scheduled for one more. He has epilepsy that we can’t seem to get completely under control. (To be fair though, he went from having hundreds each day to just a few dozen or so…) Though he’s getting physically stronger, he doesn’t generally walk more than 50 steps at a time. (Although 50 steps at a time is amazing!) He needs a wheelchair when we go out. He has a dozen medical specialists, and that’s not hyperbole. He needs weekly PT, OT, and speech therapy. He generally does not respond to his name and he does not say any real words. He doesn’t seem to understand safety concerns or changes in tone of voice when we try to alert him to danger. When Duncan gets frustrated that Miles will probably knock down his tower/building/whatnot, he’s probably right, and when he gets upset about it, Miles thinks it’s a hoot and laughs. It’s hard to explain to Duncan why that’s okay. And it’s currently impossible to explain to Miles why it’s not okay.

DuncanTower
Duncan’s doomed tower of dino-thingies
His challenges add to our life-as-a-family-challenges. We need room in the van for his wheelchair at all times. When we go to his appointments there is rarely enough handicap parking to maneuver his wheelchair so I have to park like a jerk in the compact-car sized parking spots in the rest of the lot. I have never been good at asking for things but I have learned and continue to learn to be an advocate. It’s a work in progress. We have all had to learn to balance and prioritize—sacrificing some things that meant so much before, but that now seem trivial.

Walkies

Despite the challenges inherent in being Miles’ mother, I find that being Miles’ mother is the easiest part of the job. He fills me with so much joy, and each gain feels like we’ve conquered a new mountain. He has long since decided that he wasn’t going to follow anyone else’s instruction manual, but instead that he’s writing his own story. I am so blessed to be able to read along.

Miles&Mum
Miles and Mommy