Things I’ve Learned Since the Diagnosis

According to the GPS data from the bus company, the bus arrived at school on time today, for the first time all school year.

The whole ordeal of trying to get the school system to ensure that my child is on time to school – and this is the second year in a row I’ve had to push and push – has made me reflect quite a bit on what I’ve learned since we got the Monster’s diagnosis.  Some of these, obviously, pertain to just about any parent with their children, but some have special emphasis for those of us with children with special needs:

  • You know what’s best for your child.  There’s nothing wrong with advice from doctors, experts, teachers, et cetera… but they’re not the ones who are living, day in and day out, with your child.  They’re not the ones who see how your child is reacting outside of the brief interactions they have with him/her, and they’re not the ones who, fifteen years from now, are going to be coping with the person they grow into.
  • You have an obligation to educate yourself.  Following on my first point, there’s a lot of information out there, and you’re going to get deluged with it.  You need to learn, and quickly, to sort through it and figure out what applies to your child and what doesn’t.  Worrying about what causes Autism, for instance, is a “good to know” if you’re going to have other children… but kind of unimportant if you’re more concerned about treating the child you have.
  • Communicate with your child’s doctors/therapists/teachers/et cetera.  This is kind of a follow-on to the prior point… but it requires more.  It’s less “search on Google” and more “know who these people are and reach out to them, and keep up with it.”  My mother, for example, was a PTA president for years and years, and knew all of our teachers, how we were doing, and whatnot.  I can’t say that I necessarily know all of the Monster’s therapists… but I will, at least via email, in the very near future, and they’ll know who I am.  We’re very active about soliciting advice and asking for narratives about how he’s doing – from the school staff, from his doctors, and whatnot – and while we might not always listen to the advice, at least we have it.
  • You need to advocate fiercely for your child.  No one is going to advocate for your child if you don’t do it.  There’s the old adage – “the squeaky wheel gets the grease” – which is so very, very apt.  The Monster’s bus got “fixed” only because I kept emailing and escalating.  And even I don’t believe it’s going to stay fixed if I don’t keep watching them and reminding them that I am doing so.
  • You need to remember your other children, if you have any.  R is only 19 months old, and everything is fun to him.  But at some point, R’s going to be cognizant of the fact that he has a special-needs older brother, who needs his parents to do so much more for him… and he needs to not feel neglected or less loved.  We’re already talking about separate “R time” and “Monster time” in the near future, so they each get alone-time with each of us, or alone time with both of us together.
  • There is nothing wrong with throwing elbows.  For anyone who has known me for a very long time… I used to be a very, very nice guy.  I didn’t like to ruffle feathers.  I wanted people to be my friend, and thought that by being friendly, I’d more easily get what I wanted.  The whole theory of “win-win”.  Being the parent of a child with Autism, though… I’ve learned that a lot of people in the world are not wired that way, and you can’t be afraid of others’ feelings when you’re advocating for your child.  If I’d been worried about that… the Monster would still be getting to school late every day.
  • Make time for your significant other, and not just time to discuss the child.  Couples with a child with Autism are awful about doing this.  Hell, I know couples who have NT children who have trouble NOT talking about their kids, even alone with each other.  Find time to remember why you supposedly like (or, dare we say it, love) each other.  Try to keep something resembling intimacy going, even if you have to do the very-unsexy-thing of scheduling an appointment on each other’s calendar.  Try to find a sitter or family member who can watch the kid(s) for a few hours a month so you can go on the occasional date.  Do something to keep yourselves together, or you’ll fall apart.
  • You need to find an outlet for yourself.  This is a lesson that my “Dads’ Talk” support group hammers home frequently – you need to carve out a solo island of normalcy in your life.  You’re going to, in the beginning, feel guilty about taking “me time” when there are so many other things you need to worry about, be it therapy appointments, home work, childcare, spouse/SO time, et cetera.  But there has to be room in your time for yourself, or you’re exhaust yourself trying to keep yourself healthy and sane while fighting everything else.  (For me, it’s curling.  For the wife, it’s choir and her Baltimore Mommies activities.)
  • There’s nothing wrong with feeling guilty sometimes, either.  I might joke about it, sometimes, but I genuinely do often feel like a horrible person for having to push so hard for my son, for constantly wearing the “Bad Cop” hat.  (Probably that “nice Jewish boy” deep inside me that’s watching with horror while I throw elbows, or while I bring guns to knife fights.)  I dislike feeling (or being made to feel) like I’m asking for things that others aren’t asking for or expecting.  I feel bad about learning about tricks and shortcuts to work the system in my child’s benefit, even when it is for things that he’s entitled to.  And, at night, after my wife’s fallen asleep and the kids are in bed, I even sometimes let myself just kind of settle back on the couch in the dark and admit to myself that I probably am an awful example of a human being.  And, on some level, I have to be okay with that, for the Monster’s sake.

2 thoughts on “Things I’ve Learned Since the Diagnosis

  1. Good for you. My kiddo just started high school this year. I’m widowed and have had to learn to be a different person in order to get my daughter’s needs met. It goes against my grain to have to “be” the person who has had to ask for multiple IEP meetings, bring in my experts, my attorneys etc. But, it’s my job to provide the best for my daughter so that she can fulfill her life’s destiny! I take my job seriously! !

    Best wishes-

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