Conversations With Mary Ann: The Diagnosis

There are some feelings so nagging and persistent that they won’t go away, no matter how often they’re pushed aside. This was the way Mary Ann was feeling about M’s struggles. He was doing great academically. Yet he was crying a lot and always seemed frustrated and discontented. Some of this behavior could be attributed to the fact he was one of the youngest kids in his class. However, it couldn’t explain the vast majority of his struggles.

 

It was a challenging time for Mary Ann because nobody seemed worried except her. And she began to doubt herself when all her concerns were quickly dismissed. She wondered if she was making an issue when there was none. Worse yet, was she willing her son to have symptoms when he was perfectly fine? 

 

Mary Ann lived in this confusion for several years. Although, she did have a bit of reprieve when M was diagnosed with Perthes. Not because M’s struggles went away but because Mary Ann was dealing with all the ramifications of the disease, as mentioned here

 

But all her apprehensions came to a head one day and she knew she had to do something to help her son.

 

The class party

M was in second grade at the time and Perthes was behind him. It was one of the regularly scheduled class parties they always had at school. Mary Ann and another mom were in charge of organizing it. As a general rule, M didn’t do well at these celebrations. But this time it was worse.

 

Mary Ann remembers being done with her part and sitting down on a chair to spend some time with M. He crawls into her lap and starts crying, not caring what anybody thought of him. She described him as ‘a heap of a human laying on [her] lap’. 

 

It should’ve been a great day for him. It was a class party, every child’s favorite school activity (next to field trips of course). All the other kids were thrilled and so excited. Meanwhile, M was in a huddle, crying his eyes out. It was at this moment Mary Ann realized she needed to do something.

 

She couldn’t ignore her doubts anymore. It was clear M needed help and she needed to find out how to get it for him.

 

Taking the first step

Mary Ann’s first step was to discuss her concerns with the pediatrician. Based on what she was describing, the pediatrician believed M might have a sensory processing disorder. But the only way to find the cause of M’s issues was to do a full-scale psychological evaluation. Unfortunately, the psychologist couldn’t perform the tests until several months later.

 

In the meantime, M received OT (occupational therapy) to see if it would help him with his sensory processing issues. Mary Ann was also taught how to create a sensory diet for her son.

 

Getting a diagnosis

By the time the psychological evaluation rolled around, Mary Ann wasn’t sure what to expect. But she was prepared to accept whatever outcome. Even if her apprehensions were invalidated. Her only goal was to make sure M got the help he needed.

 

As it turns out, Mary Ann was right to be concerned, test results showed that M had ASD (autism spectrum disorder)  with a secondary diagnosis of ADHD (attention deficit hyperactivity disorder). In addition to being gifted. 

 

Unlike Perthes, getting this diagnosis was more of a relief. Because M’s behaviors finally made sense and now they could find ways to assist him. 

 

It also brought some closure for Mary Ann. Because it justified her doubts and confirmed she made the right decision in getting M tested. Without the diagnosis M would’ve never received the help he needed.

 

The next hurdle

Getting tested was only the first step, the next hurdle was when and if to tell M. 

 

After all, M was so young, would he even understand the diagnosis? As a result, Mary Ann spent a lot of time researching the best ways to share the diagnosis. She wanted to make sure she disclosed it in a positive way. It also gave her time to process her own emotions while figuring out how to tell him.  

 

But she knew it was important for M to know his diagnosis.

 

The struggle of not knowing

A large part of her decision to tell M was the fact when Mary Ann was younger she struggled with anxiety. However, she didn’t know it at the time. She didn’t have a name for her issues. All she knew was that she would have times when she got so sick to her stomach, she would throw up. She didn’t know why it happened and why she was the only one struggling with it. No one else seemed to be having this kind of issue. So for a long time, she wondered what was wrong with her. She believed it was all in her mind but she couldn’t make it go away.

 

Then she remembers when she first learned about anxiety and the tremendous relief the diagnosis brought. It validated her symptoms, removed the shame, and brought healing. It was freeing to know there was nothing wrong with her, it was just the way her brain worked. 

 

The benefits of knowing the diagnosis

Mary Ann wanted to empower M in the same way by giving him a name for his struggle. Because it would allow him to understand himself better. And to learn to appreciate and celebrate his uniqueness, instead of being ashamed of it.

 

The diagnosis would also give validity to his struggles, knowing they were not in his head. Rather, it’s the way his brain was wired.

 

 On top of that, it would also make him a better self-advocate in the future.

 

Additionally, Mary Ann was pretty sure M was beginning to notice the difference between his behavior and his peers.

 

The second hurdle

It was about a year later when Mary Ann told M his diagnosis. His reaction was nonchalant, although he did make a passing statement, ‘so that’s why I’m like this’.

 

The second hurdle Mary Ann had to jump through was how many people to share this information with. She wanted M to enter a room without everyone knowing his struggles and judging him before they even got to know him. It was important to her that M be the author of his story.

 

Who do we tell?

This is definitely an issue all parents deal with. How many people do we share the diagnosis with? In most cases, providers like teachers and doctors will know. But other than this small group, how many other people do we share it with? 

 

For May Ann, this was M’s story. She didn’t want to take away his narrative. She wanted to respect his boundary. He’s young now but as he gets older he may not like the fact everyone knows about his disability. It may be a boundary violation for him. 

 

Mary Ann wants to give M the freedom to decide when, how, and with whom he shares his story. She wants to make sure everyone hears it from him first and not from her. This is why she only shared M’s diagnosis with a very small group of friends and family.

 

But with who and how much of our child’s diagnosis we share is up to us and what is best for both our child and family. There is no right or wrong way to handle this situation.

 

Conclusion

All in all, getting the diagnosis was a huge sense of relief, although there was also some scattering of grief with it as well. In the next post, Mary Ann will share how she turned her weakness into one of her greatest triumphs.

 

To be continued….

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