Thursday, April 4, 2013

Resources and Advice

It's been quite a week!  I doff my hat (or twirl the belt of my pink, fuzzy robe more like) to professional writers who do this daily.  It's so rewarding to hear feedback and make connections, but it's also mentally and emotionally draining to dig deep.  I need to finish up so I can watch The Office and eat Reese's peanut butter eggs.

A few friends have reached out and shared that they will be passing along my story to help a friend or family member facing a possible autism diagnosis.  If that happens to be you, It's gonna be okay.  Really.  I know even reading this story or resources about autism can just twist you into knots.  You're reading about possible therapies, diets, bio-medical approaches, and well, some stuff that just seems far out.  And you are willing to try anything, everything, all at once. It's gonna be okay.  I feel that way too, then I talk it out, and I'm okay for awhile, and then some article or firestorm in the autism community will get me all worked up again.  The sad thing is that many parents with kids like ours are very, very hurt and angry.  And they channel that anger to fight for what they think is best for their children--which I get.  But anger will slowly rob you of joy.  When you find yourself feeling angry or confused, don't go to the Internet!  It will not make you feel better.  Talk to your spouse, make a lunch date with a friend, go do something that makes you happy.

Above all, follow your gut and get your child screened.  Autism screening can be done as early as 18 months. It will not hurt to be cautious.  If your primary pediatrician does not take your concerns seriously or takes a "wait and see" approach, get a second opinion.  It often takes several months to get in with a specialist, so don't wait.

I waited for Jeremiah to "catch up".  When he was 2 1/2, I filled out a screening device myself and hemmed and hawed over it.  I was not an expert.  I only had one child as a frame of reference.  If you are researching autism in concern about your child, call the doctor tomorrow.  I know it is so hard to even admit you are worried, but take it a step at a time.

If you are newly diagnosed, prioritize your next steps.  You cannot get a plan in place in a week.  For us, it was schooling, funding/insurance issues, speech and occupational therapy, then finding an specialized therapy for autism.  At age 3, we were referred to a developmental pediatrician and from that appointment to our diagnosis was 6 months.  From diagnosis to a fully realized plan took 9 more months.  You will get to a place where you feel like you've regain a measure of control.  Be kind to yourself and your spouse.  Let others be kind to you.  They are not judging you or being fake.  If they are offering help, they are good folk and really care.

If you are a family member or friend of a family like ours, I'd like you to know that we see ourselves just like you see yourself. We are just a family.  We have special needs, true.  Our child has special needs.  Words like normal sound pejorative to our ears.  Neurotypical or typical is how we refer to our children that do not have a particular diagnosis.  But they are all our kids.  Period, The End. Don't get hung up on labels.  Everyone's situation is their normal.  We all just want to belong.

When we talk together, please ask out our child with special needs.  Just how they're doing. We love to talk about them.  We don't get to talk about them as much as we'd like with our friends because we often don't have much to contribute to the discussion when our child is not at the same place developmentally as their peers.  So please ask when it's appropriate.  And then other times, we need a break. We desperately need to talk about mindless enriching programs such as The Bachelor or our muffin top and how best to conceal it.

Before I close, I want to mention my wonderful husband, Alex, and our amazing family, especially our parents-- Nana & Papa, Grandma & Grandpa to Jay.  I wrote this for me, but I mainly wrote this for them.  This is everything I wanted to explain and didn't know how.  Thanks for being patient. Thanks for loving Jeremiah and never, ever acting like he was in any way less than the blessing he was when he came to us on May 29th.

I knew I was totally ruined in love for that little boy the moment I felt a silkiness run down my arm as I had him on my shoulder in the hospital room.  I was expecting to see spit-up. Instead, I saw little hand had fallen and found a resting spot.  That's the image I'm gonna remember when he and I are out-of-sorts.  And that little toddler trying to feed me yogurt.  The little boy carrying his own diapers in a tiny backpack to baby preschool.  A big boy riding the bus, always ready for Chick-Fil-A and the next outing.  It's the same little boy.  And autism has nothing to do with it.  Raising him and our daughters is the privilege of our lives.

He's just our boy.

Faith based web resources:
Chosen Families (Hidden Disabilities)
Not-Alone (Special Needs Parenting)

Blogs: While very diverse in their viewpoints,  all are respectful and encouraging
Autism Wonderland (Mom with elementary aged son with autism)
Flappiness Is (Mom with preschool aged son with autism)
Mostly True Stuff (Funny blog; Mom with a son with autism and daughter with Down's Syndrome)
Laura Shumaker (Journalist and mom with adult son on the spectrum; real and optimistic)
Singing Through the Rain (Faith Based blog; Mom with preschool aged son with autism )

Books I Recommend:
Ten Things Every Child With Autism Wish You Knew by Eileen Notbohm (Autism mom)
Finding Your Child's Way on the Autism Spectrum by Dr. Laura Hendrickson (Faith based; Autism mom and psychologist)
The RDI Book: Forging New Pathways for Autism, Asperger's and PDD with the Relationship Develoment Intervention Program by Dr. Steven Gutstein

Middle Georgia Resources:
Developing Minds
Central Georgia Autism, LTD.
Marcus Autism Center (Atlanta)

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