Diagnostic journeys and trials

When there is something different with our children, we want to know why and how to address it. When Mack was a baby and screamed constantly while covered in exzema, we sought medical diagnosis of food allergies and changed my diet. He improved over time. When we needed to assess why Mack was breathing loudly, we got a scope series to look at his airway. While this delivered certain accurate, helpful information, the doctor who performed it had a propensity to overdiagnose and prescribe meds for reflux so we fell victim to that as well which was inaccurate. Medical diagnostic tests are generally accurate as there are hard criterion to measure by. Mental diagnoses are harder to accomplish than medical ones. The criterion are subjective creating a difference depending on practitioner. There are few mental health diagnoses that are simple or consistent to diagnose. Add to this difficultly that some mental health professionals don't prefer diagnostic labels, nor do many parents. There is still a stigma surrounding mental health, particularly with children. Many feel that by labeling kids, we are putting them in boxes and limiting their prospects. Others, like me, feel as though the diagnosis opens opportunities to understand our loved ones and help them achieve their greatness. When Will was small, I had many people ask if he had autism. He obsessively lined up his toys. He NEEDED specific color plates, bowls, utensils, cups. Refused to eat if he didn't have the right color. Refused to eat anything that wasn't his idea but couldn't tell me what he wanted until I taught him the signs for the foods. He was particular about his wants and needs even from infancy. Transitions were impossible. He had many hours long meltdowns daily. I insisted he was quirky, but nothing was wrong. Even when we did decide to get his diagnosis when he was seven, it was because I still held onto the idea that he was somehow wrong. My journey to accepting that different isn't wrong was powerful. And necessary. Though Will was diagnosed at about seven, we started looking into and trying to find a practitioner when he was six. It took more than a year of frustration and road blocks to get the help we needed. This needs to change drastically. Children and families struggling with mental health needs shouldn't have to wait an entire year for services. We shouldn't need to go from one system to another and wait on multiple lists to get the help we need. This is often the case, though. We are seeing it again with Mack. We never sought diagnosis for Mack's ADHD or SPD because we were handling things just fine. His needs weren't interfering with life and daily needs. We were able to parent him as he needed. He is quirky too. But differently. We could handle hanging off the couch to read better than meltdowns every day. Now, we are looking into a different diagnosis for him. OCD tendencies have crept up. Mack is nearly 10 which is the most common age for boys to be diagnosed with OCD. He's right there. He's always struggled with mild anxiety surrounding his food allergies and contamination. Which he should. That can actually kill him. The last month or so has seen an increase in hand washing, though. He must wash his hands before eating (good hygiene, right), and after being outside. These seem logical. But, he used to fight me about washing his hands. This was a drastic change resulting in dry hands too. Beyond the hand washing, he has begun being afraid to touch food after his little sister, Kae, has done so. She is five, and frankly, five-year-olds are gross. But his aversion is deep and illogical. If she washes her hands to his satisfaction, he can be ok with her touching things. But this is a challenge and not something he is happy about. So I am calling psychologists who are well versed in OCD and discussing his challenges and symptoms so we can get help before this expands into something more. I have called about 10 people and one has called back. This is part of the problem. Desperate parents can't get in touch with the people who are supposed to provide help. Then when we finally do, we hear things like "I don't think diagnoses are that important" and "I'm not sure I can help you" and "I don't take any insurance, you have to find hundreds of dollars to pay out of pocket". This is frustrating and unrealistic while we watch our kids suffer and struggle to learn how to help them. So we turn to the interwebs to attempt to learn how to do it on our own. Or we ask the school. Or the pediatrician. All this lengthens the time it takes to get appropriate care for our precious littles. I am not sure how to fix this issue. But it is a big one. Perhaps through my master's classes I will find some hole in the system that is easily plugged streamlining the process and helping people more efficiently. If you are wondering whether you should seek diagnosis for your child(ren), the answer is yes. You should. You should get help like you would if there were a physical illness. But the road is not easy. Remember you are your child's best advocate so never stop fighting. Reach out if you need encouragement to keep up the good fight. Don't go it alone.