This blog is not FDA approved
First off, I want to thank Eric for inviting me to post on Black Box Warnings to talk about my son, Doorbell (as he is affectionately called). I was reading a very poignant post from OCDTalk called OCD and Watchful Waiting and made a comment to which Eric then asked if I would like to make a contribution to his blog. And of course I said “yes”…you don’t say “no” to Eric, else he’ll unleash Le Clown upon you … and well, you don’t want to know the rest…
In all seriousness, I am grateful to be given an opportunity to write about all the feelings that have recently surfaced since having a neuropsych evaluation for my 10 year old son.
My son is pretty freakin’ awesome and endured more in the first year of his life than I could ever cope with. Below is an excerpt from a post I have called Smart Boy which gives you an idea of how resilient babies are…
December 22, 2002
Forty-eight hours have elapsed.
It’s Christmas Eve 11:30 PM. Doctors knocking on my hospital room door. Two doctors are telling me that my baby is bleeding out of every orifice with massive edema and internal bleeding. They don’t know why – they need to operate immediately else he won’t survive. They tell me in all likelihood he will die regardless.
It’s Christmas Eve – my son is going to die. I’ve not even held him – I witnessed his Baptism and Last Rites. I may never hold him. I’m not religious but I’m desperately praying that he doesn’t die on Christmas.
After the surgery, Dr. G comes to my room. He gently smiles and touches my arm asking how I’m doing. He tells us Doorbell has survived the surgery much to everyone’s surprise. He has gangrene in his intestines because he went so long without oxygen after his birth that his all his major organs shut down and so far part of his intestine has died and he has a massive hematoma in his stomach that is bleeding – they don’t know how to stop it. They have clamped off his intestine in a couple of places but there are more areas that look suspicious. At this point it’s just a minute-by-minute watch. He tells us if Doorbell survives two more days he’ll have another surgery. He tells us the truth – his survival rate is very low; don’t get your hopes up. If he survives, he may have massive brain damage.
Two days later; Doorbell is still alive. He also pulls through the 2nd surgery with Dr. G. He has several internal & external stomas. He is very ill. He is still bleeding internally and requires many transfusions. Dr. G tells us he will be in the Neonatal ICU for a while. He may not survive – don’t get your hopes up. He upgraded Doorbell to hour-by-hour survival.
101 days later, Doorbell is discharged with a couple more surgeries under his belt. Dr. G has informed us we can get our hopes up.
Throughout Doorbell’s hospital stay, we’d been very positive. My husband and I were very close and helped each other cope – we lived in the day and didn’t think about the future. At that point we didn’t know what it held; we just wanted to be with Doorbell as much as possible because we didn’t know if he was going to die. It took my husband about 1 year to really trust that Doorbell was not just going to expire at any moment. He went through a lot of anger and emotions for about 2 years. I didn’t understand that – I didn’t have a lot of angry emotions; I was just overjoyed that our son was alive and thriving. He was alert and very bright as a baby. We were all amazed when he recognized letters in the alphabet before he could talk. He stunned us with his use of American Sign Language (I was fluent at the time and decided to teach him to sign) and completely floored us when he started reading at age 3. I thought – AH HA! This will be easy – he’ll thrive in school.
He started preschool around 4 ½. That’s when the calls started coming. Your son can’t sit still, he constantly interrupts and corrects the teacher, your child cannot cope in ‘circle time’, your child doesn’t understand personal space, your child needs to have the teacher’s attention constantly…your child, your child, your child.
Who was this child? Yes, our socialization interactions were limited. We didn’t have friends with kids, we couldn’t even think of daycare with his food allergies and worries about possible illness from a compromised immune system. But we went to parks and such; we tried to have a very ‘normal’ toddlerhood. But I wasn’t prepared for this.
So we found a small progressive private school and Doorbell has had the freedom to work through some of his social issues in an environment that is very forgiving. His doctors have never recommended medication; we have never had any kind of a label for him. Part of me wanted it that way but part of me wanted to KNOW – what is going on? I am the type of person that needs to know what and why. No one could tell me – his doctors said ‘wait and see’; his teachers said ‘wait and see’. I tried – I saw us move 3 steps forward and 1 step back, 2 steps forward, half a step back etc. But I noticed that Doorbell was not writing well, he was choosing to not attend classes, he was disruptive most of the time, he had some nervous ticks and when his anxiety peeked, he couldn’t stop talking – and I was stressed.
At age 9 ½, I finally decided to get him a neuropsych evaluation. Because I KNOW that you don’t go through the kind of fire he’s gone through and come out unscathed. When he was young, his neurologist had always told me that he probably has some sort of brain damage, but what it was, was not apparent – and yes, we could do an MRI but she said that the only thing it would tell us is that there was damage – at the end of the day, he’s still the same child.
Years later, I realized that was not enough, I wanted to know if I was expecting things of him that he wasn’t able to accomplish or if I needed to find a different way of teaching him…I needed something to help me navigate the stress of what was ‘going on’.
The neuropsych was great – the results showed where exactly Doorbell’s strengths were and what areas were compromised with suggestions and recommendations to help him cope with some of the issues. His IQ was well above normal – and even though I know IQ is not always the best indicator of creative intelligence, it did make me feel relieved that he was functioning well.
The downside was that he had been given a label, mostly for the sake of having insurance pay for this eval and so that we can use this eval to receive ‘reasonable accommodations’ if Doorbell went to a different school in the future. He was diagnosed with a Non-Verbal Learning Disorder and ADHD. The doc reported that Doorbell was bright, articulate young man with a nice personality – and given the severity of his birth situation, it is miraculous what he has accomplished. And the best part, all of the issues he struggles with are things that can be overcome with maturity, time, patience and practice (possibly drugs). Finally – an outcome I could sink my teeth into with a road map for improvement.
What was completely unexpected was the overwhelming amount of emotions that surfaced the evening after bringing home the written report. I spent the entire night sobbing – not really knowing why, but sobbing none-the-less. I think I was angry – finally.
Angry with the doctor that refused to give me a C-section despite everything happening that indicated severe distress with Doorbell; anger that my son was going to struggle from a situation that he did not ask for, sadness for him because I know he is teased at times and feels frustrated because he speaks like an adult but writes like a pre-schooler, guilt that I was so angry when we were so lucky that Doorbell is the person he is when so many struggle with disabilities far more severe.
I can’t seem to get a hold of my feelings. They are all over the place. And I cannot believe that they took so long to come. I really thought I had dealt with everything and I’m not sure why it’s so different. Everything that the eval ‘showed’ was not surprising – so why am I so emotional now? What difference is there from the day before he started the tests to the day after I spoke with the doctor? There is NOTHING different, my son is the same sweet little boy that talks non-stop, jumps with excitement over EVERTYTHING and says things like “I’m in an existential quandary”. So why is having this on paper so different and difficult? What really kills me is that I’ve started implementing some of the recommendations, have started weaning Doorbell off white flour and sugar and started acupuncture with positive results…yet I’m still struggling emotionally.
I know that we have another hurdle that I’m also not sure how to handle. Medication – to help him focus. I go back and forth with one person in my family about this. EVERYONE in Doorbell’s life has suggested that we avoid medication except one person. Her argument is valid – why would you not try something for your son that might give him clarity and focus and possibly make his day to day life easier? Would you keep insulin from him if he was diabetic (this is an argument I’ve heard several times from different sources – always using diabetes as an example)? I don’t have a good answer – except to say that I’d rather try other alternatives before turning to pharmaceuticals. But am I denying something to my son that might be beneficial? I don’t know – I just don’t know… I’ve read countless articles from both sides of the argument and I’m still no closer to an answer.
So that’s where we stand. We are three weeks into Doorbell’s dietary changes and he’s dropped 5 lbs and seems calmer; but is that enough? I wish I knew.