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Friday, December 14, 2012

A letter to the new autism parent

Welcome to Club Spectrum!  You didn't want to be here.  Don't feel bad about that.  No one signs up for this gig.   Think of it this way, at least you now know what the Hell is going on.  Better than not knowing at all.  Mama Fry ain't no expert but I do have some tips that help you from going bat shit crazy. 

1)Pace yourself.  You are about to start a never ending marathon.  Know when to take a break.  Embrace the couch and some bad TV.  Or if you are one of those gym goers, do that.  Avid reader?  Go fire up that kindle or go old school and buy a few books.  You're going to have a lot of time in therapy waiting rooms.  Might as well enjoy reading some check your brain at the door novels.  Know it's okay to get absolutely nothing done on some days.  Or weeks.   

2) Get off the Internet.  It can scare the crap out of you. Seriously, stop playing Dr. Autism Google.  You're looking for the autism cure needle in a Internet haystack.  Step away from the search engine. 

3) Get on the Internet.  I know, opposite advice.  Here's the twist.  Get on social networking sites.  Talk to other parents.  Get to know them. Not just what they did to treat X Y and Z. You'll get a better understanding if those choices are right for you.  Autism can make parents feel very isolated. Sometimes it is hard to get out and network.  Facebook, Twitter, and online groups are awesome.  Mainly because when you are in the dark on your kid's iPad hoping like heck the melatonin will kick in soon, you can chat away.  (Don't you go Googling melatonin yet.  You read this all first buddy!) Autism parents/caregivers are always awake somewhere on the planet. 

4)Be prepared to hear a lot of advice you did not ask for.  Warning, it never ends. I find sarcasm and raising my eyebrows  over my glasses helps a lot. 

5) Respect your elders in the ASD world.  Now don't go taking their world as gospel but recognize what they do works for them.  You'll see why as you earn your stripes.  The kiddo is 8 and we've been dealing with all things autism since he was before 2. Trust me newb, what you are telling me to try, we've done. Seriously, do you really want to be the type of person I just described in item number 4?  Don't be that know it all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6) Accept the fact that you are going to try stuff that is totally not going to work.   That miracle thingie you just read about in a chat group won't do jack all for your kid.  Meanwhile every other kid who has, is thriving.  It's the luck of the draw with this folks.  You meet one kid with autism, you have only met one kid with autism.  Some cures/therapy/meds will be duds.

7) Autism is effing expensive.  So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING!  Don't be afraid to ask for therapy and or lessons for something as gifts.   These folks care about you and your kid.  They'll be happy to know what they bought is actually getting used.   Not sitting around collecting dust.

8) Accept that some folks who buy gifts for your kid won't do the above.  You're going to get a lot of gifts that your kid won't even be remotely interested in.  They meant well.   They knew it was a hot toy.  Save it.  You never know.  Maybe in a year or two, they might like it.  Or donate it.  Regift it.  Return it for therapy cash.

9) Be open to doing stuff you think is ridiculous.  You really just don't know what your kid is going to respond too. Give it an honest college try before you realize if it's a hit or a miss.  This means diet, meds, therapy, supplements etc. Just try.

10) Take your kid out everywhere.  I'm serious.  It may be small trips at first but it is the best thing you can do.  You're teaching them coping skills.  Life happens.  People have to food shop, go to the bank, post office etc.  You would be doing it anyway if they didn't have autism. Know their limits of course.  Baby steps first.  Today, it's a trip to buy milk.  Another time, maybe it's a trip to the pet store and the library.  Life from now on will take military like planning. Warn them what's coming but go about your business.  They smell fear.  Seriously, the more panicked you are, they will turn that dial to "11".

11) Allow yourself a pity party.  Moan, cry, rant and rave and do it when you need too.  More than once.   Just remember you still have a kid that needs you.   So don't dwell in it to long.   If you find yourself doing it to far to frequently, know when to ask for help.  Be it from a partner, family member, friend, or doctor. Yes, this isn't what you planned but it's here.  So now what?  Exactly. 

This isn't about getting through it to an end point.  This is your life now.  This is your new normal.  I can't promise it will get easier.  You will just get better at dealing with it.  Be it through humor, prayer, yoga, crafting, blogging, or a thousand other escapism activities. You will do this.  You can do this.  Remember for as hard as you are working, so is your child.  So now and then, relax and just order another side of fries. 

34 comments:

  1. Well aid......You should write a book:-)

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  2. Well aid......You should write a book:-)

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  4. Thank you from the parent of an 18 month old who is sitting in limbo of does she-doesn't she. No matter what we might find out in the next year, your advice is spot on!

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  5. And where was this when we were diagnosed?! This is great advice!

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  6. My son is 13 and they still aren't sure.. Some doctors say yes some say no. It get frustrating at times. For him its social interaction, ( he really only speaks to those who are safe and answers questions when asked) very little compassion for others and a very PICKY EATER. He would rather starve than eat things he does not like

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  7. This article rings true for all parents who have special needs children. Thank your for humorously paining a realistic picture of our lives! Love it!

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  8. I think you should add 1 more point. Be prepared to help educate others and ridiculed for your "bad parenting". This is especially true if your child is on the lower end of the spectrum. Many, many people judge and say that if the parents did this than they wouldn't act that way. As a mother of a 17 year old with mild autism and a learning disability I have battled this for many years, and even with teachers. Still battling with his teachers to educate them that he is not lazy and dumb, but that his brain does not process things like ours.

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    1. I couldn't agree with this more. I educate my friends and family as often as I can through posts on Facebook. That way, it's out there and I'm not ramming it down their throats. I've learned too that it means a lot to some. A couple of friends have contacted me privately with "I thought I was the only one."
      This is one scary assed walk. It doesn't matter how high or low functioning your kid with Autism is ... it's scary. And hard. But OMG worth it.

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    2. I don't have kids with autism but a friend of mine does. I pray for you all daily. You all seem so strong. I came here looking for gift ideas as she is a single mom with two boys. Thanks for your advise of cash

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    3. I've never gotten any flack, but then I have a spiel all ready if anyone opens their mouth after looking at me sideways. People soon learn to keep their mouth shut if the first hint of something is going to get them a deluge of words like apraxia and echolalia and diagnosis etc. And if that wouldn't stop them seeing me do the happy dance while informing them of the latest milestone ends any negative discussions. But then I can be a little too comfortable with oversharing :D

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  9. Great advice, wish I read this when I started out!

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  10. Amen sister! My son is now 5, so I consider myself at about a late freshman level and always learning.

    One other point: always remember what it was like for you at first and actively keep reaching out in your community to help new parents just starting out. I had women mentor me and I really try to do the same. The one word I use to describe our life is "isolating" and it makes all the difference in the world to have experience, strength and hope from others on the same path!

    Thanks for your great blog! I'm new but am signing up for more fries!

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  11. YES times 11!!!!! You show great wisdom my little french fry. ;P Couldn't agree with you more.

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  12. I totally, wholeheartedly agree with #10! Get your autism child out in the world, seeing and doing things. It might make things easier or it could always be difficult to take your child to a certain place, but you're doing it, you're making the effort.
    Spot on post, per usual, Mama Fry! xoxo!

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  13. LOVE this with one exception - Google was my friend. As a matter of fact, I got my PhD in goodle years ago. Our son is 9 now, and I was constantly being told that there was nothing amiss. I learned a world of info via internet. Also - TRUST YOUR GUT. And keep fighting the good fight, you're the best and sometimes only advocate for your child.

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  14. You are awesome!!!!!! I think this should be handed out with the diagnosis. :D

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  15. You hit a bullseye with this! Remember new Club Autism parents, from an old vet.... once upon a time this was all so confusing, overwhelming and I had no idea where to turn to or who would help. I found patience and tenacity I didn't know I had, and before I knew it, kiddo was 18 years old, and I surprised myself dishing out advice to those who were asking me. How did I get there? One day at a time learning along with my child. Sometimes, it's one minute at a time, through gritted teeth, the 12th hour of Barney, stripping batteries from the half dead flashlight in order to buy five more minutes of operation out of the keyboard. You will do fine as well, and find yourself when your kid is 18 looking back wondering how you got that far that fast. My kiddo Baby Mozart and I wish you much luck, light, and joy as you do!

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  16. we got our diagnosis last thursday after 18 months of waiting and whilst we were waiting all our focus was on getting a diagnosis, now we have a diagnosis and the waiting is over we have just realised that life actually carries on after the " your child is on the autistic spectrum". i am drowning in the "well, what do i do know" place but this is a lifeline, if only the peadiatrician had given me a copy of this instead of the mountain of useless info they did then maybe i would be fumbling in the dark with the light switch at the tip of my fingers intead of drowning in the deep with only the down calling me. thank you very much.

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  17. Excellent advice, been doing this for 8 years, only way is one day at a time. Little things are celebrated, such as finally toilet training or going to a fast food place without a meltdown. Always be patient and hang in there. Celebrate all the baby steps of progress they do add up.

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    1. couldnt agree with you more its hard but the baby steps along the way are very important to celebrate their progress.

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  18. Thank you for this! I'm kind of new to the Autism Mom community (just joined in April). As I'm reading this, I feel as if I'm reading my own thoughts!

    My first 6 months in this process, I dedicated myself to learning "What the hell is Autism?" Now, I'm trying to take the next step and find people (or bloggers) who I can relate myself with - I am not alone here :)

    Thanks for this letter! It is much appreciated!

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  19. great post it helps people better understand this new life. Its a rough road but i have found with my son who is autistic that the older he gets the easier it gets and that may not be for everyone but since he's gotten older he's had very little meltdowns and we can take him to more louder places too. But the one thing that hasn't changed is if you tell him you are going to a certain place you better go straight there cause if you don't meltdown city. i am your newest follower

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  20. All of this is very good advice. We just hit the two-year post diagnosis mark, and I wrote this post on what NT parents should know about autism:

    http://www.momintwocultures.com/2012/12/what-you-need-to-know-two-years-out.html

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  21. Amazing, thank you very much for your help and your support, us parents who are new to this need more people like you! thank you!

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  22. I just love this! I've been at it for some time, but still need to revisit this advice frequently.

    I also wrote a "guide" for those of us deep in the trenches: Meditation for an Autism Mom.

    ***Why haven't I spent more time on your site? Problem corrected starting now.

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  23. God, this is like you got in my tired, confused, over caffeinated brain and somehow still read it. You officially get a link on my blog now. Know what I like to say (and laugh like a crazy woman) when asked how I do it all?..... YOLO!!!! (Muahahahehehehehahahahahehehehehaaaa)

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  24. Great advice! I love the sentence about the Melatonin kicking in... snort.

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  25. I could totally use some help about finding some of those autism groups with chat rooms and such. I have been navigating through this last year since my daughters diagnosis on my own and I need some help, or at least someone to vent to and so i know I am not alone.

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  26. From a parent who has just had their child diagnosed THANK-YOU,for helping me realise I haven't just fell into a big black hole... Keep up the good work :)

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  27. My 13 y.o. son was diagnosed in August. I thought the world was going to be coming up roses from then on, because we finally had the diagnosis. I really needed #11 today. Thank you. Glad I found you.

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  28. Loved number #11. We go a mile a minute, exhaust ourselves to the point where we want to scream and we forget WE CAN! We forget to take care of ourselves, get a pedicure, take a hot bath, even we need time outs :)

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  29. I stumbled upon your blog while researching a story about autism awareness for my employer. What a great set of tips. Thanks so much for sharing. And delightfully written.

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