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.