I wrote this in January 2018, shortly after my youngest son spent a few days in the hospital getting tests run. It was a somewhat intense time, that provided a learning experience for my husband and I. My hope is that you may somehow benefit from the sentiments expressed here. Since this time my children’s diagnosis’ have evolved and changed.
I’m a mother to two wonderful boys. Both of whom have specials needs, or disabilities, depending on which community you ask. My oldest son is on the autism spectrum which manifests itself in loads of anxiety about leaving the house, clothing issues and extremely selective eating. He has some fun quirks that we love and is an amazing little human. My second born has cerebral palsy because of a stroke at birth. I know it’s crazy, right? Babies have stroke as often as the geriatric population. In fact your highest risk for stroke is in your first month of life. Fortunately for us, we found out right away. I have since learned that so many children go un-diagnosed until 2 years of age or more and miss important therapy they should have been getting from the start.
My boys have some complex medical needs and I have more then once found myself feeling overwhelmed. I have cried about their futures and wondered what I should expect. My questions have been met with “We just don’t know” and “Time will tell”. The professionals don’t know anymore than I do when it comes to what these boys will be capable of.
One of our sons specialists described my son with cerebral palsy as “an outlier of an outlier group.” He was the best thing that happened to us so far. While we didn’t get as many answers as we would have liked we did get perspective. He told us something no doctor we had seen had been willing to admit before. It was something that I wish all parents of children with complex health conditions were told right from the start. He told us that most doctors in their whole career would never see a child with the health conditions my child has. He told us from now on it was up to us to educate them. It was our job to tell them what our child’s needs were. We needed to know his condition in and out, we needed to know what tests to ask for and when. We needed to stay on top of our child’s care to make sure he was getting exactly what he should be.
At this point you might be thinking that doesn’t sound right. The doctors know what they are doing, they have been to medical school. Yes, they are professionals. Yes, they have been to school. Yes, most of them are good at what they do. However, think about what it is that they do all day. Who do doctors see? What conditions do they treat? The majority of pediatric doctors handle colds, fevers, tummy aches and ear infections. They are great at helping parents get through the basics. Unfortunately they are so used to seeing worried parents with little to worry about that they get really good at reassuring patients that everything is normal. Imagine a sleep deprived parent full of love comes to the doctor about how their toddler has been waking up screaming at night. The parent insists that something serious must be going on.
Desperation in the parents voice they tell the doctor “My child looks terrified and thrashes around, I just can’t get him to calm down. He screams and hits me. I try to talk to him but it’s like he can’t hear me. This goes on for hours and I don’t know what to do.”
The parent may have done a quick google search and saw that some children have seizures at night. The parent wonders if that is what is happening. The doctor knowingly shakes their head and responds “Night terrors. It’s perfectly normal. It’s just something that happens with children this age.”
The doctor may have some additional suggestions and they send their patient away. This happens everyday, a parent comes in %100 sure something is horribly wrong with their child. It ends up being nothing. So what happens when a patient comes in with a real problem. Doctors get so used to reassuring parents their child is normal what happens when they are not? It can be hard for them to shift out of that mode. For that very reason we have well child visits with milestone charts. Doctors use these to try to catch the kids with “red flags” and refer them to specialists. Did you know that some nurses assume you didn’t understand the question and mark the child as good in areas you may have marked differently. Some doctors don’t listen to their patients concerns because of the surplus of worried parents they see everyday. I had one nurse tell me that I needed to mark on the chart that my child could do an activity he definitely could not do because he looked like he could. My son was already diagnosed with cerebral palsy but imagine if he hadn’t been and due to her prodding a patient says a child can do something they can’t. Suddenly this red flag get’s missed and the child doesn’t get forwarded on to the appropriate specialists. The parent is reassured everything is normal. Do you see the problem?
The “red flags” get missed or misunderstood parents will get dismissed in many fields therapists, doctors even specialists. They know what they see and more often then not they wont ever see a child like mine. If you are a parent of a child with special needs you may have already experienced this. Maybe you didn’t even realize it was happening and you thought you were just being crazy or a hypochondriac. You have likely told yourself that the doctors know best. Perhaps you have already grown frustrated with your child’s care providers. Struggling to come to terms with them needing so much pushing to give your child the care they deserve.
In case you haven’t been told yet I want to repeat what that specialist told me. As the parent of a child with special needs you need to do everything you can to be informed about your child’s condition. You have to know when to push and to know what to push for. You aren’t alone. Countless parents face the same challenges. Join support groups for parents of children with the same condition. If you don’t understand it well yourself find articles that explain it to you. As a parent you are capable of so much. It is a huge responsibility to be the one in charge and it might feel unfair. Other parents don’t have to tell professionals what to do. You are already being asked to do so much in just the everyday care for your child how can you possibly do this too. You can, and you will. You can be an incredible support for your child and can accomplish so much if you put your mind to it.
I was having a moment of self doubt today. My son is non-verbal and we need to start using a speech generating device. We wont have much support from the professionals. It feels overwhelming and I wonder if I am enough. A mom in one of the support groups I am in told me that she had to do it on her own too. Not only did she do it but it spurred her into a career of becoming a speech therapist herself. That’s when it hit me. She isn’t the only parent to accomplish great things because of her child. I know of others. If you’re looking for an inspirational story about a great father who accomplished much for his child read about Mason Fitch Cogswell and his Daughter Alice Cogswell. His daughter became deaf at a young age from illness. There was no one teaching sign language in north america. So you know what he did? He and his colleagues sent Thomas Gallaudet to Europe to study at schools for the deaf and bring back sign language. Not only did he make sure his daughter had a way to communicate but he assisted in creating the first permanent school for the deaf his daughter being the first pupil.
Do the research, make the sacrifices, participate in studies, and be the amazing parent you are. Your kiddo needs you, the one who cares about him more then anyone else, to be dedicated to giving him the best he can get. You got this!
I’d love to hear about inspirational parents you have come across in your journey in the comments below!