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An Open Letter to New Parents

6

October 7, 2009 by Marj Hatzell

Dear New Parent of a Child with Autism,

I’ve been where you’ve been, trust me.  You are going through stages of healing (you know, anger, denial, acceptance, yadda, yadda, blah, blah, blah) and it will take some time.  You just found out your child has autism.  Those words are ringing in your ears and deafening you.  You ache to kiss your child and make the boo-boos go away, but these are some pretty big boo-boos and they ain’t going away over night.  You feel alone, angry at the world, like you’ve been thrown to a pack of wolves and left to fend for yourself. You feel like you have to navigate this all by your lonesome.  That’s where I come in.

See, other parents are the SINGLE BEST RESOURCE a parent of a child with special needs has.  When I was in your shoes a few years ago, I looked forward with a blank stare, unsure of what to do next.  It was almost like I was frozen in time.  I couldn’t even think.  And then I met another parent of a child with autism and it turned out that it was the best thing that every happened to me.  Here’s what I wish I knew then that I know now:

  1. You aren’t alone. Seek us out, we are there.  We’re on the Internet, we’re in local parent groups. We are in books.  You will find us and we will be there for you. Misery loves company. It takes a village. There’s strength in numbersWhatevs.  DO NOT go around apologizing to folks for your kid’s behavior (unless they are clearly being destructive or bratty) and DO NOT go around telling everyone your kid is autistic. It’s none of their freaking business.  That’s personal information. Would you go around telling everyone you sit funny in the restaurant because of the episiotomy tear you got  giving birth and the wicked hemorrhoids you ended up with? Nah. Didn’t think so.  If they ask you nicely, it’s up to you how much information you want to share. In my personal experience it gains nothing but pity and y’all don’t need that.
  2. Become an expert on your child. Start at the bottom and read EVERYTHING YOU CAN GET YOUR HANDS ON.  Read things from all philosophies. ALL OF THEM, even if you think they are looney-toons (and trust me, there are plenty out there!).  Immerse yourself in it. Learn everything you can.  If there could be a PhD for Bugaboo and Bug Boy, I’d have one. And the husband would be auditing my classes.
  3. Get a degree in Google.  Again, read it all. But be careful: there are plenty of false prophets and snake oil salesman in this world. It is extremely political.  Try not to get on parent boards and be all, “OMG I’M A NEWB!  What do I doooooooo?” Because there are some militant nazis out there that are control freaks that will scoop you up, chew you up and spit you out.  You’ll know when you see ’em.  Avoid them like the plague.  Unless you like being a leper who follows people around blindly.  Then, by all means, as you were.
  4. Start making decisions that make sense to you and feel right for your family.  There are great therapies and doctors and medications. Fine out what works best for YOUR CHILD.  Don’t listen to what Johnny and Suzie down the street did. And if they are pushy and you feel uncomfortable, thank them for your advice and tell them you are still in the learning/info-gathering stage.  Hopefully they will buzz off before you have to hammer a sign on your front lawn that says, “STAY AWAY LOONIES!”
  5. Start learning everything you can about IEPs, the process and goals that are appropriate for your child. Start thinking about you want long term. Then start thinking about short-term goals that will help you get there. Don’t just say, “I WANT HIM TO TALK.”  Try, “I want him to improve his communication skills.”  Keep an open mind.  While some folks have to get into legal battles with school teams, I will say this:  You attract more flies with honey than you do with vinegar.  And if that doesn’t work, advocates and lawyers do. Because, you know, maybe you don’t want to attract flies anyways.  They are dirty, little creatures and lay maggots. But you often get the best results by knowing what you are talking about YOURSELF and becoming your child’s best advocate.
  6. Make some friends of parents with autistic children.  Don’t compare your kid to theirs.  You can, however, learn from their experiences. Just like a “normal” parent, there will be things you will do differently or things that they wish they had done, period.  Filter out what works for you.  They are just as crazy as you are.  Or in my case, much crazier. But that’s ok, ’cause I’m like a crazy magnet, yo.  And I’m CDO (OCD in the right order).
  7. Keep your non-autism parent friends. Sometimes it is nice to NOT have to talk about autism. TRUST ME ON THIS ONE.  While you want to learn everything you can at the beginning, you cannot let it consume you. You will go completely insane.  You will still need to find a way to go out with the girls/guys, go on walks, have cups of coffee, etc. Don’t tell me you don’t have time or don’t have a babysitter. Find the time. Find a babysitter. If I can do it, so can you.  PS – sometimes there are very responsible teens living in your neighborhood that are great with children with special needs. Contact your local high school child development teacher (or local university special ed dept). They might let you put up a flyer or something.  Just Sayin’.
  8. Take time for YOU. As in, you still need to go on dates. You still need to secretly meet the hubby for lunch. You still need to go to a B&B for a night or two and have a night of debauchery some quality time alone.  There’s a high divorce rate among parents of special needs kids.  It’s no different from non-special needs kids, but stress is a HUGE contributing factor.  Reclaim that magic, it will get you through some difficult moments.  Word to the wise:  pleasuring each other goes a LONG WAY.  Just sayin’.
  9. Stop feeling sorry for yourself.  Get over it, y’all.  It sucks. You hate it. You want it to be different.  You don’t want your child to suffer. You want them to be normal, cured, whatever.  IT AIN’T GONNA CHANGE. The sooner you realize that, the better. It may sound harsh, but you are wasting valuable time being depressed and sad. Your child needs you to be at your best. They need a healthy mommy and daddy who can tackle problems, advocate for their child and are patient and loving. Screaming and crying and throwing tempter tantrums is a WEE BIT COUNTERPRODUCTIVE.  Life is too short, start living each and every day.  Unless you are an attention whore, which means you know exactly what you are doing.
  10. Realize that your child will still do great things, that they are inherently beautiful and presume they are intelligent. Do not allow your child to be the victim of a self-fulfilling prophesy.  Set the bar high. Expect more. They can do it.  They need unconditional love. They need a parent who will get out the bear claws if necessary.

Now, I’m not saying my experiences are perfect.  They are, however, MINE.  This is my normal. This is my life. I chose to think positively and work hard.  You can choose the same. Or you can choose to isolate yourself, surround yourself with loonies and cry every night. It’s your choice.  But I will tell you, I’m happy and content, no matter how much poo is smeared on my walls and no matter how many times he runs away.  Think about that for a while.  And keep this in mind:  Your child will reflect your actions and feelings, regardless of his disability or lack of communication.   Figure out what you want them to learn from you.  It’s really the same as any other parent.

YOU CAN DO THIS!  RAH-RAH!!!

Signed,

DG the cheeleader (N.O.T.)

6 thoughts on “An Open Letter to New Parents

  1. RuthWells says:

    You are an inspiration, kiddo.

  2. HG says:

    You are kind of my hero; and perhaps the only relentlessly optimistic person that I have NOT wanted to bludgeon 😉

    We need to reschedule our IKEA date.

  3. the life you choose says:

    ditto to both of those sentiments.
    Except, I have TOTALLY wanted to bludgeon you…
    okay, no I haven’t.

  4. Plenty of people want to bludgeon me. Lucky for me, it’s illegal.

  5. lmarea3070 says:

    Great advice. You handle yourself well, even though you may have your days. Who doesn’t?

  6. What nobody realizes is that many abusive or “in-denial” spouses will not allow a child to be diagnosed in the first place. Therefore we need to study custody battles in family courts and link it to Autism, rather than study Autism and un-link it to divorce.

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