Lost at Sea.

I was helpless two and a half years ago.  Near Christmas 2009, our pediatrician threw us in the dark sea at night and told us to swim.  I did not know how but I knew I had to, so my son would get to shore.  I did not know if I was heading to land or further out, circling or not.  All I knew was that I had to go keep moving to get out of the water.

At an ear infection appointment in December 2009, my son’s pediatrician said my son might have autism.  She told me that she would make a referral for diagnosis, at one of the best facilities in America, in our own backyard, UC Davis MIND Institute.  She was not sure whether her referral would work, but she was going to do it nevertheless.  It turned out that her referral was not worth the paper it was written on.

When I spoke to U.C. Davis MIND Institute, they told me that they were, primarily, a “research” facility, backlogged over six months in appointments, and it was unlikely the referral would result in an appointment.   Upset, scared and lost, I asked what to do.

They referred me mistakenly to a place called Far Northern Regional Center. This center was located in Redding- 165 miles from our home, one way.  A round trip would be 330 miles.  I was devastated.  Was this the closest place that could tell me my son had autism?  Was it so rare or specialized that I would have to travel this far outside the Capitol of the State of California to get a diagnosis?  That seemed – bizarre.  [And indeed it was bizarre- there are many competent pediatricians, pediatric neurologists, psychologists and other health care providers that could have diagnosed my son in Sacramento but I met with nothing but incompetence and ignorance on our journey.]

I might as well have been on one of these…

I called.  The person asked where I was located.  I told her.  She said their center could not help me.  I was outside their region.  I asked if she could refer me elsewhere.  She did not know where to send me.  No one else in their office could help me.  [This was how disconnected the whole Northern California health care system was in our experience.]

I ended up “googling” and found another Regional Center on my own.  I wondered if this was the right fit.  I called.  They said they probably could not help me, but if I would fill out a questionnaire, they would consider it and someone would call.  It was all I had, so I took it.

Meanwhile, I contacted a psychologist colleague who had assisted me in legal cases I’d had in the past.  I asked if, as a favor, she would come out and tell me her opinion about whether my son might have autism.  She told me she did not know much about autism but she’d come out to observe him and give me her thoughts.  She did so.  I was grateful, but she refused to give us any diagnosis and was noncommittal about whether my son had autism.  The only thing I remember her saying was that he was “toe-walking” and I could get him to stop, by saying “down on feet.”  [I have never stopped him from standing on his toes.]  So, I was still lost.

Finally, a local Regional Center case worker came to our home and did an “observation” to determine whether a referral for diagnosis was in order.  After about 30 minutes, this man made the referral.  My son was exhibiting many signs of autism – predominantly echolalia, inappropriate toy play (staring at spinning wheels on a remote control car) and lack of eye contact.  He made a referral to UC Davis MIND Institute.

What my pediatrician could not accomplish in 6 months, the right Regional Center did in 6 weeks.  And so the diagnosis was made.  At one of the pre-eminent establishments associated with the word “autism”, in the country.  But guess what?  Once they handed me a diagnosis, they gave me absolutely no direction.  They did not refer me to a speech, occupational or physical therapist.  They did not urge me to contact the local school district for services, the school was required, by law, to give me. They never said a word about Applied Behavioral Analysis (ABA).  They gave me a diagnosis, smiled a pitying smile, and waved goodbye.

UC Davis waves goodbye…

They put us on their boat, dried us off and dropped us back in the water telling us we were, in fact, adrift in the Sea of Autism.  They did not point the way to shore.

I found our speech therapist through a local, free Parent Magazine ad.  My husband and I paid out of pocket about $400 for an assessment.  My son was “assessed” over two days.  Individual speech and a social skill class were recommended.  We had finally reached land, four months after being thrown in.

Once we started, I was lucky enough to sit in a waiting room with two mothers with boys on the spectrum, older than my son who’d been through IEPs and ABA and brought me into the “sisterhood”.  I found real help.  Not a doctor, therapist, psychologist or school official – two moms – Julia and Jen.  Mother to mother, they knew.  I could never thank them enough.  It would always be too little, but I offer it now, again, THANK YOU both.

I was overwhelmed the first few times I waited with them during social skills class.  They shared everything with me.  Especially, the importance of ABA and contacting the school district.  It all seemed so foreign and hard to remember.  I wrote it down.

Eventually, when the water cleared from my lungs, I realized those two moms, and the speech therapist that put me in the room with them, were not just safe harbor.  They were part of my family now.  And it was good to be home.

[I learned on Friday that my son’s speech therapist, who works for the speech therapist that helped us to shore, has accepted a position in another town.  I was going to write about the transition and how difficult it will be but instead, I was reminded of this journey and it came out instead. ]

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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25 Responses to Lost at Sea.

  1. Lisa says:

    I’m glad you found a life-line to help you survive the sea that is Autism. Excellent metaphor.

    As I read more and more about autism and diagnosis and resources, I am amazed by how different (just like autism itself) the experiences are from family to family. Tate was in Early Intervention. When it was time to transition as he approached age 3, we were handed off to our school district, which has a comprehensive Early Childhood program for ages 3-K. The teachers prompted us to work with our ped, who referred us to a couple of places. The neuropsych that we went with gave a comprehensive report that included resources, referrals, websites, support groups, and books. She told us about ABA and howmit would be a good fit for Tate. I feel like we were given a nice big houseboat compared to your dinghy.

    • solodialogue says:

      This is part of why I began the blog. I was so lost and I was ignorant of autism. My son was always autistic. He didn’t just wake up at age 3.5 and start showing me but I knew nothing about autism & our pediatrician never brought it up.

      I just want anyone who might be adrift -wondering why they can’t find answers who may stumble to my door to know they are not alone.

      I had no barometer – no other children my son’s age when he was a baby that he was exposed to or siblings that were near in age for comparison. I feel bad that it took so long to get going on therapy.

      It sounds like your ped saw it in Tate much earlier or maybe you just knew. Ours was a hard road. One I’m glad to be able to put behind us.

  2. Lisa says:

    Oh, and sorry to hear about your therapist. It’s hard to say goodbye when someone has been so valuable…

  3. Mom2MissK says:

    That is the shittiest thing about this diagnosis. And yes… you got me mad enough to swear here. The doctors just say, “yup! It’s autism. And oh, by the way… you should probably get your child into therapy.” — but they don’t tell you what therapies, where to find them, or how to afford the therapies once you do find them. It SUCKS.

    I’ve actually been working with a grass-roots organization here in Cleveland to help other parents with exactly the same issue. Connecting for Kids (http://www.connectingforkids.org/) actually covers the whole gamut of childhood disabilities, but I helped them create a 4-page quick reference for parents with a new ASD diagnosis or who are new to Cleveland. We need more of this kind of information out there and we need it now.

    Ok… rant ended. Deep breath. More coffee… and go!

    • solodialogue says:

      What a great group and idea! And yay, you for putting together the guide on ASD! Anger looks good on you! 😉 Look what you accomplished! Great motivator Karla! I’m getting off my rear to do something – maybe not as brilliant but I’m gonna try! xo

  4. blogginglily says:

    I like the idea of myautismteam.com for that reason. Lots of parents, logging in, sharing information about who is looking at their kiddos, asking questions. I haven’t really used it a ton, but the idea is a good one. Not sure how well it’s being executed, but things can always get tweaked.

    • solodialogue says:

      I will go to the computer to check that link more thoroughly today! I bet we all have something to share with new parents. And I’m getting an idea… I will be sure to blame- uh- credit you and Karla with it soon. 🙂

  5. Tessa says:

    It’s been my experience that other autism moms can help so much more than most of the “professionals” I’ve met.

  6. eof737 says:

    You have been on quite a journey to date and the life lines have come and gone at crucial moments. I pray that you will continue to find supportive and insightful folk for Tootles… what a journey. Chin Up! 🙂

  7. Sounds so familiar…sigh…….recognize the names…the journey. You’ve come a long way. I’m going to private email you something right now on facebook. Great post. 🙂

  8. We got referrals along with the diagnosis, and we couldn’t even afford the initial assessment with the recommended center on one salary, let alone the monthly fees, and of course- insurance covered none of it. $0. So there we were, so close to everything our child needed, and in no way able to provide it. So when people ask me why we took our family overseas- that is why. I’m sorry your therapist is moving, I hope he takes well to the new one. And I’m so glad you found your family- I ended up writing to make my own! 🙂

  9. You really made me choke up with this post. It all sounds so familiar and is so hard to go back to. That incompetence, that being left to drown at sea, the not pointing you in the direction of services that exist locally… It’s too much! Here, they did it because they knew they would likely have to pay more if we were well informed. There was nothing I could do about it legally. It just makes me *so* angry. That part where you talk about the pitying smiles? Infuriatingly true!!!

    It was the thank you to those two mothers that made me choke up though… The being back on dry land. The water clearing up from your lungs. I get so emotional just thinking about it. I, too, am just so incredibly grateful to the people who helped, the people who pointed us in the right direction, the people who gave us support.

    • solodialogue says:

      I get frustrated thinking of those pitying smiles. Thinking they did us such a big favor with a diagnosis but giving us absolutely no direction. The cluelessness of where they left us is maddening!

      I made myself choke up on my two fellow mama friends too! I cannot tell you how many times you and all our fellow bloggers have helped me get through a difficult situation better than any other “professional”. I’m so grateful for this community.

      I think we can put our collective heads together for guidance to those who follow us. I know there are sites that seem to do that. I will be looking at that and thinking about ways to help those who are feeling what we felt back then.

  10. Maddi says:

    Great article. If your son is growing and starting to wonder about his identity, these folks can help: http://autisticadvocacy.org/
    http://www.wrongplanet.net/

  11. It is a shame that while early detection/identification is so focused upon, the actual diagnosis and treatment is out-of-reach by lengthy wait lists, geographic constraints, poor information/referrals, etc. I am sorry to hear about your experience, but am glad you found support in those 2 moms! Hope Tootles will enjoy working with his new speech therapist. It’s always sad to say goodbye.

    • solodialogue says:

      Many blocks were set in our road. As parents, we always find a way around them and because of that other parents can be not only great comfort but valuable resource as well. 🙂

      I hope Tootles likes his new ST as well, whoever he/she may be.

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