Hi friends! I’ve been tossing around the idea of starting a blog about our journey for quite some time now & finally decided to take the leap. I’m sure that 9 years into Skylar’s diagnosis of autism, some might ask “Why now?”. Well, read on for my list of reasons for “why now?”. Also, many of you are probably wondering why I chose to name my blog “I AM JUJU”? You can click here to read “My About” page which tells the story of why I chose this silly name.
1) I’M READY!
It really is that simple! I have been told for years that I should start a blog or write a book and share our story, but for years I’ve not felt in my heart that I was ready to do that. Quite frankly, it isn’t easy for me to be vulnerable with people about our struggles. Autism truly is a devastating diagnosis to receive. Immediately following Skylar’s diagnosis all I could focus on was not completely falling apart. The story of Skylar’s regression & eventual diagnosis is a long, emotional story for me and I am working on sharing that with you. My hope is to share that in the next couple of weeks. Believe me when I say that it is heavy reading material; I am working through sharing it. It is extremely emotional and is bringing up a lot of pain, hurt, and anger that I thought I had already worked through.
I have been praying about the timing of sharing my heart with more than just my close circle of family and friends and felt led that now is the time.
2) I WANT TO ENCOURAGE OTHERS!
It is my hope and prayer that I can offer encouragement to those that are also walking a difficult road. I have many friends that have children with special needs. Not all of them are families with children on the autism spectrum. Some are families that have children with Down’s Syndrome, Cerebral Palsy, or a variety of other physical, medical, or developmental disabilities. One thing I can tell you is that no matter the disability, I share an almost immediate connection to these people. Many times it is just a simple smile and a nod that confirms that we are walking the same rocky road.
I often receive calls from friends and acquaintances that go something like this: “Hey Julie! My friend’s little boy was just recently diagnosed with autism. Would you mind if they called or emailed you some questions?”. I never mind those calls, but I figured that I can possibly help even more people by putting our story out there for you to pass on to those people you know that aren’t ready to talk to someone, but might be able to benefit from this blog.
The biggest message I want you to know is that YOU ARE NOT ALONE!
3) I WANT TO EDUCATE OTHERS!
I know that there is such a big push for “awareness” regarding autism in our communities, but honestly we need to be working harder towards Understanding and Acceptance. Simple autism awareness is just not enough. I’ve felt this way for quite some time, but never knew how to really put it into words. I recently started following a gentleman named Stuart on Twitter. He is the father of a child with autism. I caught my breath the first time I read his bio, because it said “I write about Autism, forever pushing for Understanding and Acceptance. Awareness is not enough!”. I remember thinking “Yes! I feel the EXACT same way!”. You can follow Stuart here on Twitter. You can also visit his blog (Stuart Duncan) listed on the right-hand side of my blog under “Blogs I Read”.
It is not my desire to educate others about autism only, but really about having a child or family member with any type of special need. I honestly don’t think many people have a clue about what parenting a child with special needs is like. Don’t get me wrong….parenting is difficult no matter what! I am not under any delusion that if Skylar didn’t have autism that parenting would be a cinch. I just want people to realize that being the parent of a child with special needs is exceptionally difficult. I know that I just want Skylar to be happy, accepted for who she is, and to lead a happy and joy-filled life.
I want those in our community to be more understanding and accepting of her quirky behaviors, emotional outbursts, and often times very juvenile behaviors. I am so thankful for a wonderful group of friends that know Skylar and accept her for who she is. However, let me tell you, all my experiences with people I considered “friends” have not always been pleasant. I’ve been judged more harshly by people that I thought were part of our “safe circle” than by some strangers. I can not stress enough that the “judgement” has to stop! We should be encouraging and supporting one another, NOT judging each other’s parenting styles or coping abilities.
4) I WANT TO SHARE THE DIFFERENT TREATMENTS WE HAVE OPTED TO UTILIZE!
Since the very beginning our journey over 9 years ago, Chris and I vowed to one another that we would do anything and everything to help Skylar function as high as possible. We agreed that as long as it would not physically put her in danger, that we would try a treatment if there was a possibility that it could help. We agreed that even if people called us “quacks” (oh yeah, that totally happened!), that we would do it. We also agreed that we wouldn’t let the cost of treatment steer us away from trying it. We have been blessed with many things that have helped us on this road. The biggest of which are my parents, who have helped us out tremendously with various treatments as well as the blessing of my nursing degree that has allowed me to quickly find work when we have needed more income for additional therapies and treatments.
I will go more in-depth in future posts about several of the therapies and biomedical treatments that we have tried where we have seen the most significant improvement with Skylar. Until then, here is a list of most of the things that we have done:
-Applied Behavioral Analysis (ABA)
-Gluten/Casein Free Diet
-yearly visits with our Defeat Autism Now (D.A.N.) physician
-Methyl B12 injections
-therapeutic horseback riding
-a large variety of supplements recommended by our D.A.N. physician
-sensory integration therapy
-infrared sauna treatment
-Hyperbaric Oxygen Therapy (HBOT)
5) I WANT TO SHARE THE JOYS WE GET FROM BEING SKYLAR’S PARENTS WITH YOU!
We have had a long & difficult road navigating this road called autism, but I can not even express the amount of joy that we have received from being Skylar’s parents. We have no doubt that God chose us to be Skylar’s parents for a reason. We SO love this child that HE has entrusted in our care while we walk this earth. We pray daily that we will make the right decisions for her.
Skylar is so very sweet and EXTREMELY funny! She is very literal and many times the things she says has us laughing uncontrollably. I have shared many of our stories on Facebook with our friends and family and I always receive such a wonderful response. I will still share those stories on Facebook. Many of our favorite stories however, are too long to share with the limitation of characters on both Facebook and Twitter (you can follow me here!). This will allow me to share more with you!
6) I WANT TO SHARE MY HEART!
Honestly, I think this is going to be extremely therapeutic for me. It actually already has been! We are entering a whole new phase of our journey with Skylar…the dreaded “teenage years”. I must say, the last year has been one of the most difficult for me emotionally. I know that sharing these struggles will hopefully not only help someone going through the same situation, but help me navigate this journey as well.
I hope that you will come along on this journey with me whether you have a child with special needs or not. I believe that we can learn a lot from each other!