Ten Things I Wish I had Known When My Son Was First Diagnosed with Autism

 

It’s been four years, nine months since a team of experts dropped the big bomb — our son likely had autism.  It feels like an eternity.

The news rattled our world, and sent us spiraling in to a dark place that took us months to climb out of.  Stunned, scared and confused, we were desperate for answers.  What does it mean?  What should we do? Could they be wrong?

Today, our path is much clearer.  We’ve emerged from that dark path that wound its way through a heavily wooded forest. We couldn’t see the road ahead, so we held on to each other tightly, stumbling our way through one baby step at a time.

So, I thought I’d share my ten top things I learned along this journey —  the things I wish I had known when the autism bomb was first dropped on us nearly five years ago.

10.  The label doesn’t matter. Autism-shmautism.  PDD-NOS, Asperger’s, ADD, ADHD, Dyspraxia.  Does it really matter?  Not really.  To me, what matters is identifying what your child’s issues are and addressing them through appropriate therapies or other interventions.  The label may give you a window in to what to expect as far as your child’s difficulties.  It may even help you get better services from your school system. But the label doesn’t change who your child is, and it doesn’t change their strengths and weaknesses.  Don’t get caught up in it, and don’t limit your dreams for your child based on that label.

9.  Don’t carry the burden on your own. You can’t do it “all” on your own, so don’t even try.  If you have a spouse, let them share in the burden. Carve out areas of responsiblity.  Maybe your husband handles the onerous and horrifying (in my book) task of dealing with the insurance company, and you manage the dealings with the school.   It doesn’t matter how you split it, just find a way that works for your family.  It’ll give you a better sense of “team,” and alleviate pent-up feelings of resentment.

8. Listen to your gut. When my son was nine-months-old, I noticed that he couldn’t use two hands to hold his bottle.  An early-intervention specialist  from the county completely dismissed my concerns.  Later, a team of experts told us to get him in to occupational therapy right away, noting that he had bilateral coordination problems, low muscle tone and other issues that affected his motor skills.  My point is simply that if something doesn’t seem right, go with your gut.  You know your child better than anyone.  You see him doing different activities, in different settings, with different people.  You have a better window in to your child than any “expert.”

7. Find an advocate. It’s the best money we’ve ever spent.  Unless you are an expert in special education law, the deck is stacked against you when you walk in to an IEP meeting for the first time.  A  good advocate is familiar with the special education laws, knows the “system” in your county, and isn’t afraid to speak up when your child’s needs aren’t being met.  How do you even know what to ask for if you don’t know the possibilities?  Our advocate has been my helpmate, sounding board, counselor and friend for four years now.

6. Be prepared to fight. The plain and simple truth is there are limited resources for special education services in every county in this country, and you may have to fight to get what your child needs.  Be the squeaky wheel.  You know your child, you know what they need.   Pick that one must-have priority for your child, and fight all the way to mediation if that’s what it takes.

5. Stay clear of the cuckoos. This is a touchy one, and I certainly don’t want to offend anyone.  But there are some therapies or remedies out there that are just plain wacky in my book.  Don’t get me wrong.  I’m willing to do whatever it takes to help my son, and have tried a few things that are a little squishy.  But the problem I have is when a sort of “cult” emerges among followers of certain therapies, where the “non-believers” are made to feel guilty for not embracing their viewpoint.  Special needs moms already carry enough burden.  We don’t need the guilt too.

4. The county is not our enemy. There are times when I’ve felt like the whole system is against us, and I have friends who have had gut-wrenching experiences with their school systems.  But I’m working on remembering that each of the therapists and teachers who work with my son are under an enormous amount of stress too.  They are overworked, underpaid, and are performing a job that I would never have the patience to do myself.   A thank you goes a long way.

3. Take time for yourself. Most moms put their own needs last.  If you are a special needs mom, it’s probably a given.  On those days when I’m just plain exhausted mentally and physically, I find myself  losing control, screaming at my kids over nonsense.  I call it a black cloud day — a day when I feel like a dark cloud is hanging over my head from the moment I step out of bed.   My best remedy for those days is to blow off some steam at the gym.   Carve out some time for yourself at least a few times a week to get away mentally…  read a silly romance, veg out watching reality TV, go to the gym, grab coffee with a friend.  Whatever gives you a little escape.

2. Build a network of friends.  Four years ago I met my dear friend Tammy.  She has a special needs daughter, a few years older than my son.  We started getting together weekly for what we called “group therapy” — a chance to let our children play together without judgement, pressure, explanations or stress.  The playdates were great for the kids, but I think we were really the ones better off for the gatherings.  We expanded to include some other special needs moms.  We swapped information, compared notes on therapies, cried, laughed, and helped pick each other up when we were feeling low.  Nothing can replace the friendships and bonds that I’ve developed with other moms of special needs kids.

1. Things get better. Four years and nine months later, we are in a much better place.  My son has matured, changed and blossomed in to the beautiful child that he is.  Life is still tough, but I’m learning, growing and accepting this journey that God has handed me.

What do you wish YOU knew when your child was first diagnosed?
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0 thoughts on “Ten Things I Wish I had Known When My Son Was First Diagnosed with Autism

  • September 4, 2011 at 11:44 pm
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    Love this list!

    All parents have unique stresses as the result of raising children, but what is being done to help parents cope?

    My name is Crystal Lee, and I am a doctorate student in clinical psychology at Baylor University. For my dissertation I am studying stress and ways of coping with stress in parents. My hope is to use the data from my dissertation to create an effective way to help parents cope with stress.

    I am looking for parents of children ages 5-12 in three categories:

    1. Parents of children with an Autism Spectrum Disorder
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    3. Parents of children with no diagnoses

    If you meet the above criteria, please take this survey, which takes 30-45 minutes to complete: https://baylor.qualtrics.com/SE/?SID=SV_0GJF7ldjuBwBWEk

    If you do not meet the above criteria, please consider forwarding the survey to any parents you know that fit the above criteria.

    People who complete the survey can participate in a drawing for one of three $50 giftcards to Amazon.com. Additionally, people who refer others to the survey get their name added into the drawing for each person they refer.

    If you have any questions regarding the study, you may contact me at Crystal_Lee1@Baylor.edu

    Thank you for your time and help,

    Crystal Lee, M.S.
    Doctoral Student
    Department of Psychology and Neuroscience
    Baylor University

    Reply
  • August 17, 2011 at 3:53 am
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    I have a friend who’s son just got diagnosed, I should share this with her.

    Reply

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