Initial Diagnosis to Neuropsych

'Pediatric neuropsychology is a professional specialty concerned with learning and behavior in relationship to a child's brain. A pediatric neuropsychologist is a licensed psychologist with expertise in how learning and behavior are associated with the development of brain structures and systems. Children are referred by a doctor, teacher, school psychologist or other professional because of one or more problems such as: difficulty in learning, attention, behavior, socialization or emotional control; a disease or inborn developmental problem that affects the brain in some way; or a brain injury from an accident, birth trauma, or other physical stress. A neuropsychological evaluation assista in better understanding your child's functioning in areas such as memory, attention, perception, coordination, language and personality. This information will help provide treatments and interventions that will help meet a child's unique needs.' (taken from www.div40.org)

I was recommended by Ryan's Speech and Occupational therapists to have an evaluation done by a neuropsych. When I was in the process of having Ryan diagnosed, I was very unfamiliar with what to do. I had been hearing for years that he was 'fine' and that 'boys are slow, he'll catch up' but I knew in my heart that wasn't the case. When his behaviors and lack of speech got to a point where I couldn't wait any longer, I took him to a speech therapist...to me, he wasn't speaking so it was logical. I am thankful for this decision because I found the most amazing people there who have helped me and Ryan in this journey. While we were doing the initial evaluation of Ryan for his speech problems, they noticed that there was a lot more going on than a spech delay. They recommended me to see an Autism specialist. I was scared, alone, embarassed, nervous, all the feelings one would expect walking in that doctor's office. The doctor gave me a ton of paperwork to fill out and then spent around 15 minutes with Ryan in a tiny, uncomfortable room. At the end of it he told me "Ryan has Pervasive Developmental Disorder-Not Otherwise Specified. It's a form of Autism. He'll be labeled as having educational Autism so he can have services at school."........ and he walked out the door.

Um...excuse me?? What the HELL do I do now?!?!?! He gave me virtually no information. He didn't give me any leads on where to get information on my own. He basically left me to figure it out on my own. I didn't know where to turn. And the problem here, is that this happens to SO MANY parents. This is NOT the abnormality. It's the norm.

Thank goodness I had such amazing people who recognized me, my needs and Ryan's needs and have been there every step of the way. At first, I wasn't ready to learn. I wasn't ready to accept. Ryan's speech and OT taught me, without pushing me, that everything is going to be okay. And as I grew, they offered me more and more information. Then Fate stepped in and allowed me to meet a wonderful friend who introduced me to the Autism Support Group. From there it's been a whirlwind of growth and an explosion of information.

So, based upon the recommendation of Ryan's therapists (who have never steered me wrong) I took Ryan for some more formal testing. This probably should have been done 4 years ago with his diagnosis. But no one told me about it. I didn't know it was an option. And really...I probably wouldn't have been ready for it then.

I went to Neuropsychology Associates for an initial interview. I met Dr. Amy Meidinger. We spoke about Ryan. I explained everything from before diagnosis, through diagnosis and the time since. We spoke about problems, issues, joys, and everything else that makes Ryan 'Ryan'. After this appointment, we scheduled a full day for Ryan to come back in for testing. I was full of excitment, hope and tons of fear. What was this going to mean? Would it change anything? Would I found out things I don't really want to know? What if they were wrong before and he doesn't have PDD-NOS but something else?

I brought Ryan back a week later for his testing. He woke up in a terrible mood, which is abnormal, but figures! It's going to be a long, challenging day. He wants nothing to do with the routine change of not riding the bus to school, going somewhere he's unfamiliar and being separated from me once we get there. I just pray he does well enough so they can get accurate results. He got one break for lunch...so I took him to McDonald's playland. He did NOT want to go back there. I could hear him through the door; frustrated, angry, confused... I wanted to help him, I wanted to tell them how to ask him the questions differently so he understood easier, I wanted to just wisk him out of there and make him happy. But I couldn't. I shouldn't. We need these results to help him better in the long run.

When 6 hours of testing were finally over, I got to take my exhausted baby home, with the intent to return in two weeks. The results that I received were not overly shocking (thank goodness) but they were sobering. Ryan does in fact have PDD-NOS. He also has an attention disorder which is contributing to his issues. He is smart but easily frustrated and distracted. Dr. Amy believes we are doing the right things for Ryan and encourages us to continue. Overall, I am pleased...until she recommends putting Ryan on medication for his attention issues. WOW. Really? Okay... this is new. No one has ever mentioned medication before. What kind? What would it do? Are there side effects? How long do they take to work? Will it alter his mood or personality? I had so many questions come spilling into my mind, swirling around, scaring me.

Deep breath. She said to talk to Ryan's pediatrician (who is AMAZING, by the way) and get more information. I also wanted to talk to my fellow mothers, get their opinions. After all, they are the ones who live with these things, just like I do.

Well...opinions of my peers is that it doesn't hurt to get information, talk to the doctor and give the medication a shot. If we don't like it, quit. Simple. So that is the path I am taking moving forward. I am still in the process, so that will be discussed further down the road.

Bottom line: I'm so thankful to have advocates for both myself and Ryan. In my personal life and within the professionals we work with. What an amazing community.

Parenting

As parents we try to do everything we can for our children. We make decisions daily that may determine who they become, where they will go in their life, how they will view themselves...and it can be overwhelming. Sometimes parenting is the biggest joy in my life but there are times it's the biggest burden, too. It's a burden because of the huge weight that rests on my shoulders. Who thought I was qualifed to do this job, anyways?? Who gave me the right to teach what little I know to these perfect little babies?
I've made many poor choices in my life. Some are bigger than others, but they all result in a worry about how it's affected or is affecting my children. Especially Ryan. I always wonder if I'm doing enough for him, if I have made the right decisions, if I am following the proper paths to ensure that he is able to grow to his full potential. And I know that there are times I fail at this.
The other day, Ryan had gotten into trouble because of his violent behavior towards his sister Clara. He was sitting on the couch pouting when I heard him mumble something. I said "What, Ryan?" and he repeated louder "You're a bad mom".


gasp.



Did he really just say that to me?


(tears)


"Please go to your room, Ryan".


(more tears)



What did I do wrong? Why did he say that? He's never said that in all his 7 1/2 years. I know he was upset because I had gotten angry with him but...did he really mean that? Am I a bad mom?


I know (hope) he didn't really mean that. But it's the first in probably a long list of times where I am going to feel like a complete failure as a mother.

BUT...today is a new day.