"Go as far as you can see; when you get there, you'll be able to see further."- Thomas Carlyle
I will never forget that Spring day in March when I sat in my living room with my mom, and the Case Worker from North Bay Regional. I knew nothing about Autism at this point….except what I had learned from the countless hours I spent on the internet researching. She told me I had better get a binder together because I was going to need it for paperwork from that point moving forward. She told me that we need to prepare ourselves because although she was not there to diagnose him, Kaden had all of the red flags for Autism. She handed me a stack of papers, and told me these were a few of the resources available to us. This was so overwhelming, and all I could think of is what it would mean for Kaden. Who would he be? What would he be? Would he play sports? Would he go to his high school prom? All of these thoughts ran through my head and of course I had to ask. “So, what does this all mean?’ and she said “it’s just too early to know, we will get him started with services, but we will have to wait and see how he responds. There is no way to tell at this time how involved he will be. Just to forewarn you, we don’t typically see a lot of progress for months, sometimes years, if ever. Oh, and there is a good chance he may never be able to talk.”
I smiled and took the paperwork she gave me. I walked her to the door, and thanked her. The second she left, I cried and probably cried that entire day. But then something happened to me. I stopped crying and decided that I need to buck up and get to work. That’s exactly what I did. I knew there had to be more I could do for Kaden. Yes, the services offered by the Regional Center were great, and we were thankful for them. But somewhere in my heart, I knew there had to be more. So I went on a mission to search for more, and I have been doing that ever since.
I learned quickly that if we were told that a service was not available, it just meant we had to fight harder. I soon figured out that if they told us that Kaden only got 2 hours a week of speech, we had to fight for four. If I was told there was no way the Regional Center would fund a program, I just had to get pages & pages of research together and write letters. I became versed in the world of special education, and I learned to be tenacious. I had to become educated in a way that I never dreamed I could be, and in turn I had to educate other people. This has just become a new way of thinking and living…something you get used to.
In March when Kaden entered the school system, we faced some challenges as we tried to work with the district to get the “appropriate” speech services for Kaden. It’s almost as if everything stops. I mean, from a parent's perspective it can often feel as if they (they being the school district) have a sort of "cookie cutter" approach when it comes to these kids. They offer the services that they see appropriate for your child, ask you to sign on the dotted line, and then you are expected to just sit back and hope for the best while they get to work. As a parent, you have to be educated and know your rights. You have to know what is "appropriate" for your child and have professional documentation as to why. You must be persistent but not demanding, and be cautiously optimistic. The odds are they will tell you "no" the first, second, and third time you make requests, so you need to go out and do your own research and dig deep for answers. When they told us "no" the third time to our request for a more intensive speech program for Kaden, we had to pull out all of our outside resources.
I reached out to a lot of people for advice, and any insight they could offer to what we were going through with the school district. I ended up emailing Kaden’s Neurologist at UCSF as a last-ditch effort, even though she only sees Kaden once every 6 months. I explained to her what was going on, and asked for any insight she may have. She emailed be right back and said she was going to talk to some of her colleagues. About a week later she emailed me and told me that one of her colleagues at UCSF was heading up a new Specialized Speech & Language Clinic and she thought this could be helpful for us to learn more about Kaden and give us more information. She ended up getting us in to the clinic two weeks later.
So, off we went to San Francisco to see Dr. Gorno Tempini, who is a Neurologist specializing in the higher cognitive functions of the brain, such as speech and language. There was also a Speech & Language Pathologist present, who had actually called me the night before and talked to me on the phone for an hour about Kaden. Lastly, there was a Neuropsychologist also observing Kaden as he went through the testing materials. About a half hour into our session, Kaden’s Pediatric Neurologist “popped in” just to check on us and see how it was going. Tears came to my eyes at that point…there are no words to explain how grateful I was at that moment for all of the professionals who were caring for Kaden and there to help us on our quest to find more answers.
So much good came out of this appointment. We learned about how we can help Kaden with his development as he grows by beginning to approach his developmental challenges from a more scientific approach. They really want to zero in on the part of his brain which is affected by Apraxia/Speech and see how the brain waves are talking to each other. They also suggested doing some genetic testing which may give us some more answers also. There are a couple other Neuro Specialists that Dr. Tempini would like to take a look at Kaden and the way his brain is operating. They also emphasized the importance of getting Kaden involved in things like music and art so we can really build on his strengths. As he gets older, we can use these strengths to help him develop his speech & language.
I know that the team at UCSF is very interested in Kaden because he presents with an extremely unique set of neurological challenges. It just feels so good to have a team of such talented professionals be so passionate about finding the answers we continue to search for day in and day out. We now have a whole new game plan as to how to move forward, and once again that light of hope shines so bright at the end of the road!
Thank you for sharing our journey!
