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Our Journey Navigating Autism in Nashville

Our son is three, and we have no idea what is “wrong with him.” We have been excused from school and occupational therapy this past year—with an invitation to return once we “figure it out.” We have spent nights in the hospital having not one, but two, EEGs and an MRI. We have had a cancer review, psychological review, been in speech therapy for a year, read endless books about what “it” could be, have had an average of four hours sleep each night, and are still in the same place we were 365 days ago.

You see, our boy is sweet and kind and gentle. He loves music and eats an organic, vegetarian diet with the hunger of a teenager. He likes to play and swing and build—just like most other boys his age. The problem? He is overwhelmed easily. He doesn’t do well with others. He’s got a bad habit of not exactly being gentle to unfamilular adults or children (which makes play dates and group activities nearly impossible). He basically has no friends. He has something called sensory processing disorder. Marry that with his speech delay, and you have one frustrated toddler—and two parents navigating blindly in the wilds of (possible) autism.

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photo credit: alyssa rosenheck

After all we have looked into, researched, and showed up for, this is all we have accomplished finding out in an entire year. I am not coming from a place of expert parenting while I write this. I am a mom navigating the very muddy autism (or not) waters in Nashville. It’s been suggested enough times that we can’t ignore the possibility it may be true. We may have an autistic child, and we have no idea what that even means. I deflected this idea for so long. After all, our boy is so affectionate and loves a good snuggle. I held on to that as“proof,” it may have delayed us actually taking on this path as a real possibility.

Today, I am going to share with you what we have done over the course of our discovery process—the cost, the resources we have found, and what’s been beneficial (and not so beneficial) along the way. I want to give you the very best information in an organized and actionable way. Each child with autism has a very different path to take, and there certainly is no “catch-all” plan that fits every family.

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photo credit: alyssa rosenheck

We have researched a place in New York—the McCarton Center—which is often referred to as the Gold Standard for autism testing. We have been on a wait list at Vanderbilt for a few months that could take up to a year, and they are unable to tell you exactly where in line you may fall. Frankly, we can’t wait a year. The test is a standard Autism Assessment Test—very thorough—and will take one to two days. It costs $4,350 and does not accept insurance. If you want to stay local, we also researched The Brown Center for Autism here in Nashville. They do a similar test for around $1,000 and have a follow up ABA program. They have a reimbursement program set up for some insurance. Psyche is another local place we found that is also around $1,000 for the test and offers no follow up care, but can perform the Autism Assessment Test. Both Nashville facilities seemed to have opening in the near future.

©AlyssaRosenheck2015-109

photo credit: alyssa rosenheck

We struggled with knowing what our next step was once we came to the conclusion something was “wrong,” and we didn’t have the know-how to manage our child in a successful direction. We thought speech therapy and occupational therapy was enough, and he would grow out of it. Then we followed the advice of our pediatrician, and signed up for The Regional Intervention Program—with some hesitation. Our son has never done well in a group environment, and this is exactly that. Parents (or caretakers) go with their child to a two hour group session twice a week to exercise positive strategies for parenting while children learn coping skills and self management techniques. We have heard nothing but amazing things about this program—and it’s free. You “pay it forward” by helping the next round of parent once you have completed the course. We also begin this program soon, and I am very excited to report back.

I am sure anyone interested in this story would benefit from anyone else out there who has taken steps successfully here in Nashville, has advice or resources, or can encourage a next step for someone who’s lost on this journey. Let’s continue the conversations in the comments—until next time.

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5 Responses to Our Journey Navigating Autism in Nashville

  1. Heather Kelly April 29, 2016 at 7:21 am #

    My now 8 1/2 year old son was similar to your son when he was little. At 2 years old, he was non-verbal for the most part, except for a few words here in there like mama, dada, and cookie, which always came out strange. He was then diagnosed, at 2, as being on the Autism spectrum and having Sensory Integration Disorder, by someone at Vanderbilt in downtown. So we couldn’t do much then. We had no idea where to start. My husband wouldn’t even let me look into therapy because he was in denial, he still is.

    At around 18 months, up until he was 2, Matthew would SCREAM and cry loudly when people would approach him. He was this adorable blonde hair, blue eyed child and people couldn’t understand why Matthew was acting like that. Then came the questions from others “What is wrong with him?” “Is he autistic?”

    So when Matthew turned 3, I found out that I could get him tested by the local school district to get him help with speech and possibly more. By 3 years old, Matthew knew his ABC’s, numbers, colors and was starting to read a few words because I spent a whole year working with him. He had all of the Thomas trains memorized and what colors they were, and he loved the Cars movie. So I used those to my advantage to help him learn, and it worked! Oh, and Team Omizoomi, Mickey Mouse Clubhouse and Blue’s Clues helped too!

    Once Matthew was tested, the lady doing the testing said Matthew was super smart, and she didn’t feel that he needed their services. UGG! What? I pushed her and pleaded with her to help my son. I explained to her that when he gets sick, he forgets things, and we have to start all over again on some things. That he would get sick, and forget all of the colors. Or Matthew would catch a cold, and almost completely forget how to talk. But that I kept working with him on everything.

    She finally agreed to let him take speech class, which helped him to learn more about the world around him, playing games, learning how to behave like other children, because Matthew was getting to be a handful at that time.

    Then I had him retested by the district to show her that he still needed help the following year with speech, and that I would like him to go to PreK to get help with learning how to act around other children and how to behave in school with kids his age. It worked! By this time, his obsessiveness with Cars and Thomas trains was bad, but good because they were great teaching tools. But Matthew thought at that time that everyone knew about Cars and lightning McQueen and about Thomas the tank engine and all of this train friends. But not everyone does.

    He did well in PreK, he was 4 at the time. But he had an Oct. 1st birthday, so after special Ed PreK, he wasn’t old enough to go into Kindergarten. But the schools here in Mt. Juliet have what they call a Kindergarten Transition class!!! SCORE! The teachers who teach this class are amazing! Matthew learning to add, subtract, play with others, and how to act and behave for his teachers through there love for him and the children that they teach. But most of all, Matthew learned to read!!! He was 5 years old, and reading! This opened a whole new world for us, and for him.

    Matthew has trouble paying attention in class, but he doesn’t have ADD or ADHD fully, so there’s no diagnosis. The Dr. at Vanderbilt has since reaccessed Matthew and requested a New IEP in school, but the school refuses to give us one because Matthew is so smart.

    Since when does being smart keep someone from having an IEP? But it does, and it can.

    Mathew has Sensory Integration Disorder still. He will only eat certain foods. He’s starting to open himself up to tasting new juice, so I think that smoothies might be in his future!

    Turns out, Matthew has Asperger’s Syndrome, which is now not called that. They just bundle it up and call it Autism, but I don’t. I will stick with that I know and with what I’ve researched.

    I have met many parents with 2 and 3 year olds with speech and behavior issues and I’ve told them all about this. It’s my testimony, it’s my life, and I will keep standing up for my son with people at the school, with doctors, his teachers, etc.

    Matthew has trouble making friends and has trouble getting other children to play with him. They aren’t always interested in talking about Minecraft or Star Wars, but that is now what Matthew loves and what his new obsessions are. I of course, try to learn as much about them as I can so that I can carry on conversations with him and be his friend when needed.

    There is a special little boy who is normal and lives down the street from us who has been super nice to Matthew and plays with Matthew at recess. I am glad at least one boy sees how special Matthew really is. He’s just overall a sweet, caring, sensitive, loving boy.

    Keep sharing this. Keep buying books about it. Keep researching. You will learn more and more about it, and learn also how to help your son. It’s not going to get easier. There will be easy days and there will be hard days that you can’t wait until he’s in bed so you can relax or clean up the house from his tantrums or meltdowns.

    I have also had issues with meltdowns in public and in grocery stores. The more we expose Matthew to, the more changes he has to learn how to act and behave around others, and the more he is learning how to approach other children into playing with him. So never stop taking your son places. Keep doing it, no matter how hard it is now, never stop changing your days up a little bit.

    The worst thing you could do, is to always stay home and not go anywhere. Keeping a routine around having him eat close to the same times everyday is fine. But staying home is’t helping him or you. The more children with special needs get stuck into a routine of always being home and always doing things only at home, the more harder it is for that child to go to school or to a restaurant, the zoo and more.

    My kids are 8, 6 and 3! Matthew gets along well with children younger than him, and so do my girls. Let me know if you ever want to meet up.

  2. Christie
    Christie April 29, 2016 at 12:20 pm #

    No matter how long you suspect that there’s a problem with your child, the moment a medical professional confirms it– says it out loud — is crushing. And it becomes even more so when you realize that said medical professional can’t say exactly what that problem is.

    The alphabet disorders (ADHD, ASD, SPD, etc.) are frighteningly individualized; slightly different for each person, like a snowflake. Or a tumor. Which makes them difficult to diagnose.

    But at the same time, finally knowing for sure there’s an issue brings a kind of peace along with the uncertainty. Once you learn that your child is different, you begin treating him differently… which is okay. That’s how you get through the days. You learn how to navigate his moods. Slowly. You learn strategies to re-direct him and activities to reset his nervous system. Slowly he learns to re-direct himself.

    Honestly, I’ve found most of my knowledge and comfort through other parents, those who are going through something similar. I joined an online forum a few months ago, and through reading about their experiences, I’ve gotten some of the best tools in my kit for helping me guide my child through the tough days.

    Thank you for sharing.

  3. Lana May 1, 2016 at 4:54 pm #

    Thank you so much for your responses. And yes! Reach out any time – hello @ richhippies dot co (not com) ❤️

    It’s a seriously rocky path, but in confident we are going to figure this out, and you a re right – other moms have been the best with advice, I have been taking notes 🙂

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