Sunday, July 27, 2014

Going down a new path…life with a new diagnosis of ADHD and Autism Spectrum Disorder

Well hello there…I know it’s been awhile but here I am. Life has been interesting in this house the past few months and I think we are just now starting to make sense of things. You see, the road we walk in life is never straight or smooth and it rarely goes in the direction we expect it. Not that it won’t still take us to the same goal but often times we need to take a different path in order to learn and grow. Recently we had a whole new path set before us. The path of ADHD and Autism.

I’ve been wanting to post about this for a long time but just wasn’t sure how to put my thoughts and feelings down. You see when Monkey was diagnosed with Juvenile Arthritis I guess it was easy for me share my fear and concern because I wanted people to know about JA and the struggles that kids like Monkey go through. JA is not something many people know about and while it has no clear cause or cure it’s easier to explain medically to others. Monkey has an auto-immune disorder and his joints often have too much fluid causing him pain. Not necessarily simple but most people can understand that. This though, this is different. Everyone knows about ADHD and Autism and unfortunately many people have preconceived thoughts and opinions about these diagnoses. Thoughts and opinions they aren’t afraid to voice.

Zimm has always been a spitfire little boy. Even before he could walk we knew he was going to be our challenge. I mean, this little guy would just look at us and laugh when we’d tell him “NO” as he’d crawl toward the TV and touch all the electronics. As he grew he couldn’t stand or sit still…this is how he earned the nickname Zimm. He reminded hubs of a third base coach giving signals to his players. We figured it was just a phase. In the past 7-8 months though things changed and made us start to wonder if there was something else going on. That his behaviors weren’t just little quirks.

The process was long and taxing. It frustrated us to no end especially when we were struggling with extreme behavior issues. It strained our relationships here at home. I felt like we were in a revolving door just going around and around and not getting any closer to any answers or solutions. When we decided to seek a neuropsychological evaluation I was shocked when I was told that the earliest appointment was over SIX months away. That wasn’t good enough for me and if you know me you know that’s when my fight came out. My little man needed help and he needed it soon…not six or more months from now!

I called friends and they gave me names of people who might be able to help. I called those people who gave me more names. I left messages and told our story to at least 10 different people pleading with them to help me find him an appointment. Finally I found a practice with an opening that was only two months away. Still a wait but better than waiting until August. His initial appointment was set for the end of April. After meeting with the doctor we scheduled his evaluation for June 5. Finally, we had a date. Even though we still had more waiting to do having a date was such a relief.

Within a couple weeks of the evaluation we had Zimm’s diagnosis. ADHD combined type and Autism Spectrum Disorder Level 1. It took a while for the words to sink in. On one hand I was thankful that we finally knew what was going on. We could some what understand Zimm’s behavior now. On the other hand it was overwhelming. I knew some about these disorders but here were were again with a new diagnosis and unsure of where to go.

We are still in the process of figuring things out and processing the information. Thankfully we have been blessed to have friends who have children with similar diagnoses. I have messaged them and sat with them and cried to them. They have told me that while we may have a long road ahead it is one that with many resources. They have encouraged me that we are doing everything we need to do right now so that he gets all the help he needs and deserves. I still find myself so intimidated.

I worry that this “label” will change how people see him. That they will only see his diagnosis and not his beautiful personality. I’m worried that people won’t take it seriously. He is VERY high functioning. I’ve already gotten so many “Wow, really?! I’d never guess that in a million years!” comments. I’m worried about making the right choices for him. Do we continue with cyber school or send him to public school? How will he handle that transition? How will he do around other kids? How will he act toward his teacher? The school worry is my biggest worry right now. He so desperately wants to be like his big brother and we want to provide every sense of normalcy to him.

This is where my head has been the past few months. I’m sorry that I’ve been away and haven’t shared but I just wasn’t sure how. But, here it all is and I hope to share more as the days go by. Blogging has always been a therapy for me…a way to share and process my thoughts and feelings. I hope that just as my posts on JA have reached parents who needed support that my posts on ADHD and Autism reach those who are going down a similar path. Thank you all for your support and love through this. It means so much to know that we are not alone. <3