May 6, 2020 Hearing the sentence, “your child has ___ syndrome/disorder,” can be extremely scary, disappointing and can make you blame yourself. As a speech-language pathologist, it’s news that I have to deliver pretty frequently to parents.
Most of the time, I tell parents that not only is there a speech disorder, but there may also be other components prohibiting a child from learning typically, such as attention deficit disorder or autism.
How do you deal with all of the feelings that you experience when your child is diagnosed? What’s normal and what isn’t? Will the feelings ever go away?
I recently had a student referred to me for social skills development. She is a general education student who was super successful, but was receiving speech and language therapy in middle school because she was struggling to make friends.
When I first met this student, it was very clear that she should be diagnosed with autism; however, the parents seemed very resistant to getting a diagnosis.
Unfortunately, once a student is in high school, the criteria to qualify them for speech services becomes much stricter. Academic achievement is looked at in addition to performing a certain level on standardized tests. This student did not qualify on testing AND was getting straight A’s in her classes (some of which were advanced placement classes).
This meant she did not qualify for speech and language services.
I referred her to outside speech therapy in order for her to learn how to manage her emotions and to learn how to interact with her peers. After the meeting was over, I felt terrible that I couldn’t help her. The parents seemed very resistant to getting her the help that she needed and refused to get her diagnosed, even with all of my notes and documentation on her behaviors. It was clear that they were in denial about what was happening with their daughter.
I wish I could tell you this story had a happy ending, but it doesn’t. Right before Christmas, this student’s father passed away suddenly. She did not miss one day of school because she did not want to miss assignments.
She couldn’t prioritize or manage her emotions effectively and missed her father’s funeral. If she would’ve been in therapy, that would’ve been something a therapist could have helped her work out and manage effectively.
Unfortunately, this isn’t the first time that I have seen parents/guardians refuse a diagnosis or testing because they were afraid of the results they might bring. There are a few things to consider if this is you:
- Would the diagnosis help your child in the long term?
- Can the supports be modified or eventually terminated if not needed?
- Why are you afraid of the diagnosis?
- What supports would help you process the information?
When I sense that parents are resisting something that I am proposing, I give them 48 hours to digest the information and then call them to see how they are doing. It’s a lot of information to receive at one time and allowing someone to break down information will allow them to think about it more clearly.
Like anything, when your feelings are raw and emotional, you don’t always think with a clear head.
You should feel comfortable asking for more information or even asking for a second opinion. I’ve had numerous parents come to me for a second opinion or even take my testing to someone else to see if they suggest the same therapy. That is perfectly okay to do!
Depending on how you are feeling, I typically recommend counseling to parents. Getting a diagnosis can be somewhat disappointing. You have this perfect child that you made, grew, and are raising – there can’t be anything wrong with him/her! Seeing a counselor can help you process these feelings and work through them so that your feelings don’t impact your child.
If therapy isn’t your thing, I suggest finding support groups. There are all many different types of groups – some that meet face to face, some are online, some are just for moms, and some are just for dads. This will give you a chance to talk to other parents that are going through the same exact thing you are . . . or maybe something even worse.
The most important thing to remember is that you are not to blame. Things happen. This is out of our control! With the proper therapy and medication, your child can still be successful! Might it take a little longer for that first word? Maybe. Will they need an IEP? Possibly. As long as they are getting the help that they need, you have done a good job!
Hang in there and keep pushing!
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Speech Blubs is a learning app for everyone: If you want to work on language development or your child has a speech delay, autism, Down syndrome, hearing loss, tongue tie, cleft palate, or Apraxia – kids find this app very helpful. More than 4+ million parents tried the app – see what they have to say about it.
You get free access to Parents Academy and educational videos about speech development in the app. You can even talk to our speech therapist if you have concerns! If you are still unsure, watch our free webinar with speech therapist Tori or join our Facebook Group for parents.