Autism · Parenting · Sensory Processing Disorder

Neurological Evaluations and Diagnosis: What I Wish Someone Had Told Me

I hung up the phone and started to cry.

I was alone in my room so that I could speak to the doctor’s office privately. I could hear my son starting to meltdown and my husband trying to help him in the next room. But I couldn’t move. I could not open that bedroom door and go back to all the crazy. Not yet.

The reality of being on another waiting list, this one six months long, was terrifying.

Could we really do this, without any help, for another six months?

The road to diagnosis was a rough one.

We started out with a child psychiatrist, who referred us to another psychiatrist, who said (without even meeting my child) that he thought my son was likely highly gifted and that I was spoiling him a bit (this, over the phone, without ever seeing us…).

From there, I went to his pediatrician and begged her for help. She said she had three developmental pediatrician’s names. She said this is the type of doctor you need to go to. She said there is going to be a long, long waiting list.

My heart sank. But what choice did I have?

I waited until my husband was home, locked myself in the bedroom, and called them – one right after the other.

The admins were all so kind and reassuring. “Yes, you have found the right place. The doctor sees children just like your son all the time. Let me send you out our intake paperwork and I will get you on our wait list. Right now it is about 6 months out, 7 months out, 8 months out.”

All three.

I chose the one that could get us in the soonest.

That day in my bedroom, in tears and as a last resort, I also called the regional center I had read about in a Google search. The center is affiliated with the state, and usually diagnoses children much younger than my son. I  thought surely they could get us in faster.

The lady laughed at me and said, “Our waiting list is twice as long. You are better off staying with your doctor’s recommendations.”

Seeking an evaluation and possible diagnosis for my child was so much more difficult that I thought it would be. It took almost a year, from the meeting with that first psychiatrist until the first appointment to begin the evaluation process.

I know many of you are considering an evaluation, or currently in the evaluation process. I want to share a few things that I wish someone would have told me, as we pursued an evaluation for my son.

Neurological Evaluations and Diagnosis: What I Wish Someone Had Told Me

1. Don’t wait

If you think you might need an evaluation, get on a waiting list. Even if you change your mind, it could be months before you get in to see someone. There is no harm in getting the initial ball rolling, and secure your spot in line. If you decide not to pursue it at any point, you can always cancel. The family waiting behind you will be thrilled.

I made the mistake of waiting until it was so bad, we were desperate for help. I thought that when I finally picked up the phone and made that call, it would be a matter of weeks. I was wrong, and the year-long process did not serve my son or my family well.

2. Consider All Options

If I had stopped with the psychiatrist that told me I was spoiling my gifted child (and I was so tempted to – it’s a lot easier to believe it’s all your fault because that means you can fix it), we would not have the intervention and treatment necessary for my son.

Call everyone you can find online and through your family doctor. It can be informative just talking to various offices about how they approach the evaluation and what they do to help post diagnosis.

This will help you make an informed decision about which doctor/provider is right for your child. My experience has been that this helps you feel more confident in your decision to pursue evaluation in the first place. (If your child is school age, and in the school system, you have resources available to you there as well.)

3. Use The Wait Time To Your Advantage

This is your chance to become an expert on your child. Take notes about behaviors, triggers, and circumstances that you think are part of your child’s experience. This will help you answer the doctor’s questions in detail and easily, without feeling put on the spot.

Read every single thing you can get your hands on – books, blogs from other moms, and online resources helped me to learn the terminology associated with sensory processing disorder, neurological disorders, and developmental delays. They also gave me tons of tips as to things I could start doing while we waited. In the six months we were on the waiting list, we pursued occupational therapy and dietary changes for my son.

I know that for some families, the wait time allowed them to find options that didn’t require any further evaluation. They were able to come up with workable solutions for their child. When the time came for the actual evaluation, they found it wasn’t necessary.

You know your child best. Use this wait time to increase your already tremendous base of knowledge.

4. Don’t Expect Immediate Changes

This is a big one for me. I thought when we finally got the evaluation and the diagnosis, that would solve everything.

I honestly believed that once we had the diagnosis, the doctor would tell me what to do, we would do it, and then everything would be so much better.

The reality is, you get the diagnosis, and then you go home. Back to the same pain and confusion and crazy that you have been trying to address all along.

The doctor will give you next steps. And you will take them. But this is not a “fix”. It is simply more information to help you understand your child, and begin to piece together a plan to help.

5. You are not alone

I need to repeat it – you are not alone. Waiting that six months felt like an eternity to me. It was scary, and I felt so isolated. If you can, ask your doctor for a name of another mom a little further down the road that might be able to go to coffee. Find a support group, in person or online. Reach out to your friends and let them in. Message me.

Just don’t try to do it alone.

This is not an easy road, but I want to encourage you that it is a worthwhile one. My son’s evaluation and eventual diagnosis changed his life and ours – for the better. Through it, we have been able to find resources that are making a difference for him every day. More importantly, we understand him in a way that just wasn’t possible before we “knew”.

Like so many things in motherhood and in life, there are some things that just have to be lived through. I think this is one of those things.

Cry when you need to. Pray without ceasing. Take a break when you can.

And then, open that bedroom door and go back to your child.


 

11 thoughts on “Neurological Evaluations and Diagnosis: What I Wish Someone Had Told Me

  1. I had to sympathize. One psychologist told me that the reason my child didn’t sleep at night was because I allowed him to sleep with us when he woke in the night. All I had to do was “be tough” and insist that he sleep in his own bed and it would magically solve our problem. Ugh. Moron.
    Some things I wish someone had told me:

    1. Therapists, doctors and psychiatrists do not know your child as well as you do. Take their advice with a HUGE grain of salt. If it feels wrong or your child is miserable just don’t do it. We endured 1.5 years of horrific preschool and most of the year of Kindergarten absolutely miserable when I finally realized that they were wrong and I COULD give him the “structure he needs” at home.

    2. Shared experiences will bond you with others. Sharing my story, even the embarrassing parts, has produced a wonderful outpouring of support from friends and family. It’s been one of the best decisions I’ve ever made.

  2. I wish I had known:
    1. The evaluation will not always give you an answer. We’ve worked with our Developmental Pediatrician, an OT, a Speech Therapist and even a Dietician. We’ve followed an intensive therapy schedule for over two years. We still don’t have a definite diagnosis.

    2. Even if the answers don’t come, you can still help your child. Try what you can. If it doesn’t work, try something else. Watch for what helps and what doesn’t. You really do know your child best and can make a difference.

    1. Thank you so much for sharing, Jennifer. I love your hope filled message – you know your child best and can make a difference. Praying for you and yours!
      Love,
      Shawna

  3. Also, something to think about…
    I ended up going to Texas A&M University for the evaluation process.

    I had health insurance, but the appointment the doctor wanted me to set up cost $700, and it was a two hour appointment- followed by another appointment full of testing… UGH!

    The university program was 11 weeks of hourly appointments. The lady got to know my son, pushed his buttons and finally… I had a witness to things that everyone who met my son in passing would never have noticed. The university had a waiting list as well, about four and a half months. The cost was $350, paid half up front and half at the diagnosis. The end result was incredible, a 25 page report that I could present to schools and doctors.

    It seems silly, but I have a sour taste in my mouth from many of those wretched “you spoil him” comments… Of course I do, he works a hundred times harder to do the things that we all take for granted. However, I don’t for one second allow him to be disrespectful, or get away with things that NT children shouldn’t get away with. He just has his moments, the older my son gets… the more HE needs. I thought- diagnosis!! YES! Now things will get easier! It doesn’t… and every time you think you’ve figured your child out LOL he grows and changes on you… something alters his world and you will readjust. My son is now 12, with high functioning autism… some days he doesnt know which way is up, and others… well, let’s just say I often wonder if I am raising the new leader of the free world LOL

    The best advice that I received.. which seems too simple to really help is… pick your battles. To this day, my son wears his shirts backwards… lol It is what it is lol

    Thanks for letting me rant 🙂

    -Rach

  4. Huge, huge, huge amens to #4 and #5. I kept thinking getting the evaluation done and obtaining a diagnosis would instantly “fix” him, or that we would be given a clear path to help him reached the fixed level. Not so much. It is a journey, and we are not alone.

    1. It took me so long to figure that out – I honestly kept thinking I must be missing something and that if I could just find the right person, they would fix it all.
      Thank you so much for your comment!
      Love,
      Shawna

  5. A close friend, with two boys on the spectrum, always tells me, “they are like an onion, you just have to keep peeling away the layers. “

  6. I fortunately didn’t ever have to wait this long for a diagnosis. I used school evaluations, pediatrician diagnosis. I did go through our county to get my son evaluated for services that took about 6 months. But he wasn’t getting diagnosed. But like your story says, a diagnosis is not a cure. While waiting for this diagnosis, if you don’t have your child’s school set up, getting IEP or 504 plan, start that too. It takes a while also.. Do it in writing, then they have to at least have a meeting.
    The worse thing through the years for me (my son is 16, started in early intervention) is the feeling of isolation, school making it sound like it is only your child. What saved me was a forum of other parents giving help, advise, a place to vent. My advise: don’t try to fix, your child has a disability, try to give your child the tools to be a productive happy person. Don’t take on to much at once. Pick your battles, work on one behavior at a time.

  7. Ugg! The waiting lists are terrible. My son is on a waiting list for services for disabled adults. The list is about 10 YEARS long!!! It is called the “needs not being met list” ~ I kid you not. You are literally waiting for someone to die or move out of the state to clear up a slot on the list. The way we treat people in this country is ridiculous.
    Blessings, Dawn

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