The ignorance, judgement and dismissal parents typically face over this disorder is beyond disheartening to me because we are all out there, fighting for our kids, for our sanity and for our peace and most people don’t seem to comprehend that we are often hanging on to that sanity by a thread. When you have a child who appears neurotypical on the surface but suffers so much internally and can’t communicate that, people judge. Boy, do they judge! Most people have a one-track mind about kids’ behavior and if a child doesn’t act the way they think children should act, there is instant and obvious contempt for both the child and parents. Strangers, friends, family…the judgement comes from all directions all the time and it’s so very painful. People see a child throwing a horrific tantrum and automatically assume that we are not sufficiently disciplining our child or that we’ve spoiled her to that point. When people see us responding with calm instead of anger and punishment, they incorrectly assume we’re weak or oblivious when that couldn’t be farther from the truth. They have no idea how wrong they are and aren’t interested in learning anything because they mistakenly think they already know better than we do about our own children. They need for all children to fit into a neat little box that makes them feel comfortable and when that isn’t the case, our kids are treated with hostility, disgust and finally, dismissal, as are we, their parents. Meanwhile, we are suffering on a level they also can’t know and this is the scenario that often drives wedges between PDA families and loved ones, leaving us feeling even more alone. In my support groups, I’ve learned of so many parents who are at the end of their ropes because they have no support, no relief, no hope and some of them are even contemplating suicide. That’s how hopeless this can feel. I thank God that my husband has accepted our situation and does everything he can to support her and me in my resolve to improve Livvy’s life and ours in the process. There are still people in our lives who may not fully understand or believe what we’re dealing with but they’re also not interfering and I can live with that because I know what truly matters. At the end of the day, the only thing that matters is that we know the truth and that we’re doing the right things for our daughter and our family.

We did discover a blessing in disguise with Livvy’s evaluation/diagnosis where it concerns my husband and even our marriage, which was suffering at the time. When he read the report, he told me later that it felt like he was reading about his life and his own childhood (keeping in mind, even though two different people can have the same disorder, there is a very wide spectrum, so not every PDA person has all the same characteristics or severity as the next). He cried tears of relief and sadness all at once because he was finally understanding himself through her. He realized that he and Livvy are the same and truthfully, so had I. It took us over a month to admit that to each other and we cried together. I cried for him because he’d never understood himself or his differences like this before and he’d been to some dark places in his life because of that. I think he felt vindicated in a lot of ways but also far less lonely, knowing that others share his life-long struggles. He felt truly seen and understood for the first time in his life. For my part, I finally gained understanding about so many things that had angered, frustrated and confused me in our marriage that caused me to begin emotionally “checking out” and it was clear that he was in the same boat. This became a new start for us in a lot of ways and we are so much stronger for it now because we were able to heal and grow together.

Siblings of PDA children can suffer intensely as well, as they tend to be targets of rage as much as or more often than parents because they see siblings as a threat, feel tremendously competitive and can’t comprehend why they are on the same level, authoritatively speaking. PDA kids don’t understand hierarchy. They believe they should have the same authority and autonomy as older peers and adults, which is a big reason why they seem to constantly challenge any and all authority. Our oldest daughter has been through so much that has negatively affected her self-esteem, confidence and even her physical health and watching her endure all of that has been just as heartbreaking as seeing Livvy suffer from her disorder. Just last year about this time, Gia had been missing many school days because she felt sick so often. I had taken her to the doctor several times but nothing ever came of it because doctors always assumed she just kept getting viruses, possibly as a result of long COVID. There were a few times when I forced her to go to school because she never had fevers and I thought she was exaggerating her symptoms. By about mid-October, Gia had begun to experience weakness in her legs and over the course of about two weeks, completely lost her ability to walk and we had no idea why. She felt miserable with constant headaches, body aches, stomach aches, fatigue, brain fog, localized rashes, hives and severe dizziness. Then, the seizures began and we wound up in the ER twice and came home with no answers. We were all in shock and terrified that she’d never walk again but there wasn’t a single doctor who could give us a clue what was happening, except for POTS Syndrome. Eventually, Gia was diagnosed with Functional Neurological Disorder and spent over a month in the hospital and then rehab. The thing about that disorder is that we’ll never know what all the triggers were. We found out that there can be several different triggers (environmental, genetic, emotional, previous viruses like COVID) that result in a “perfect storm” for this to happen but it’s clear to me that at least one trigger was the tremendous amounts of trauma and stress Gia had endured were a factor. I will always feel immense guilt about that but I’m doing my very best to support her and help her heal as well. Thankfully, she is doing much better now and has full use of her legs!

Today, I’m happy to say that our family is much better off than we were three years ago. My husband and I committed to learning everything we could about PDA to help Livvy and try to achieve some sort of peace and happiness for all of us, which we’ve managed to accomplish. We’re doing our best to give Livvy the low-demand environment she needs in order to function as best she can, while also making sure she’s clean(ish), her teeth are brushed, she gets an education, is inspired and feels loved and safe. At the same time, we’re trying to raise her older sister to feel loved, safe and fulfilled as well but the girls can’t be parented in the same way and that complicates things in a big way. Thank goodness, the relationship they have now is much better than it has been in years but it’ll always be difficult and complicated, much like it is for my husband and I with Livvy. We are not naturally patient people and we’ve had to get way out of our comfort zones in order to learn and grow and we continue to try to do that every day. It would be an understatement to say it is difficult. When your child is so easily triggered and is being unreasonable and aggressive at the end of a long, stressful day, it’s very hard to be patient and loving but she is worth it and our family is worth it. We’ll continue to work at it and sometimes we’ll fail miserably but sometimes, we’ll nail it, just as we do now. We have to cherish all the moments of pure, uncomplicated joy because we absolutely do have lots them. For all of Livvy’s challenging characteristics, she is also extremely bright, creative, funny, silly and so warm and loving when she feels happy and allowed to be herself. She is also an incredibly talented dancer, singer and performer. Our family is complete with her and she will always be loved beyond measure by us. I don’t have a clue what the future will bring but I know that much.