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.”
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.