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!
I wanted to be the first to leave a comment. I am so proud of you for making yourself vulnerable just on the chance that doing so may help one parent who is currently struggling through what we went through over the years.
You are amazing and I know that God will use you as you tell our story!
I love you!
Thank you my love! I could not have done any of this without your support! I love not only the way you love me, but the way you love our girls!!
Glad you took the leap and joined in on this crazy blogging world. You will find complete strangers who will understand you and be encouraged by your words. You are a great Aunt Juju to our kids and we are excited to share you and Skylar with the world. We are all so proud of you. Keep writing…
Thank you for your support and your encouragement through this process. I’ve thoroughly enjoyed being a part of your blog journey as well!
Kudos to you for being willing to share your story with the world. It takes alot of courage and it is my sincere wish that your sharing is greeted with support and encouragement, and thanks, from all who who read what you share.
I am running a charity event for crafters to raise money for Autism Speaks and will be making a list of Autism resources available to all attendees. I would love to add your blog, if that’s ok with you.
I will be following along as you relate the journey – thanks for letting us into your world.
Thanks so much for your kind words. They truly mean a lot to me. I would be honored for you to share my blog as a resource for event. A huge thank you from us for organizing a great event for such a great organization!!
I’m glad that you are along for the ride on our journey!
Many blessings to you!
We are so very proud of both you and Jenny for sharing your struggles and victories with autism and cancer. You are both taking a risk, but one that has great potential rewards for others who can learn, grow and survive as they go through similar experiences. The Lord promised that we, as Believers, would suffer heartache and suffering; however, He also promised that His strength is sufficient for every trial. As our family knows, we often believed that promise after the fact–it’s tough to comprehend and believe that truth when you are in the midst of the “pain of the moment.” We will be following both of your blogs with keen interest, love, and strong admiration for the strength you show each day. We encourage you to keep the Lord “front and center” in your lives as He sustains you one day at a time. We love you!
Thank you just doesn’t seem like enough to the 2 people who have never stopped supporting us! You have truly blessed us not only with your financial support, but with your relentless prayers for our family & your ears listening to so many of our struggles & heartaches.
Thank you! Thank you! Thank you!
I am so happy you are blogging!! I feel and know not only will this help so many others that are going through similar trials, but blogging itself is very rewarding as well. 🙂 Thank you for sharing insight into your family’s life and helping others have more acceptance about the awareness of Autism. Being a parent of Andrew who recently had a diagnosis of Autism as well, can so understand the importance of this. It is never easy to have a child with a disability, but I find it’s even harder to see your child struggle with it too. I think the biggest thing is helping others to have the compassion and acceptance of people with Autism or any disability for that matter. I am grateful you are sharing and definitely will be following along, not only as a friend, but someone who can learn from your wisdom with your experiences. Love your whole family and looking forward to many great posts!!
Hugs and love,
Thank you so much Victoria! I’m hopeful that our stories may shed some light for you guys on what’s ahead. It’s surely a tough road, but there are many joys as well.
Andrew is such a sweet boy & I look forward to hearing about all the successes he will have as well!
Blessings sweet friend!
Way to ROCK Julie!!! Blogging is a great way to vent (my words, not yours) and help others. I love the pictures too – so sweet! Biggest Hugs! Kelly L. in Rio Rancho
Thank you Kelly! I miss my days of Bunco with all of you! Much love to you.
You are awesome for doing this. I am confident that your blog will help those who are currently experiencing the challenges you have overcome and are experiencing, as well as strengthen and encourages those who have a different walk. Take care and I’ll be reading. Thank you!
Thank you so much Kina! I so wished I would have had someone’s story to read when I started this journey. I hope that I can be that person for someone. Thanks for following our journey!
Blessings to you!
Congrats on your new blog! I look forward to reading it because I can totally “hear” you through your words. No matter what has happened or will happen as you navigate through Skylar’s treatments, you will write with the humor and positive attitude that I know is you! I totally miss our scrap sessions and goofy talks and our obscure references to “Friends” episodes with Chris. I miss you, friend, and I wish you luck as you conquer the blogosphere!
Oh Amanda, how I miss you my friend. I miss our craft sessions and endless laughter together. Thank you so much for your encouragement. I think of you often & fondly! Much Love!
Oh Julie, girl I love it already. You are strong and brave. I thank God that I had the opportunity to be a part of her life. I learned so much from her. I can’t wait to read more. Love you
Joyell, I know that God crossed our paths for a reason. You are such a treasure to both me & Skylar. We were blessed to have you as her teacher and our friend. I miss our chats in my office. So many great memories! Love you!
There is no doubt that God gave you and Chris Skylar for a reason. The first time we met, I was struck by your energy and positive outlook, even before I knew any of your struggles. As our friendship developed and you let me know some of the obstacles you faced as a family, never once did you come across as someone who felt they were unfairly burdoned. I am sure you have many times felt heavy with the tremendous weight of the challenges, but I never saw you face anything without grace, energy and a true sense of optimism. If anyone has ever been able to make it through tough times, it is you! Though our paths diverged, there has never been a time when I didn’t remember our friendship and admire your courage. And how could we ever forget two sweet blondies and bouncing curls running around the courtyard and swinging on swings?! I am so thankful you have this outlet to encourage and educate others and also as a place to vent your feelings and to make known areas where a prayer community is needed. Your strength and faith is incredibly inspirational.
I am truly humbled by your sweet words. I too have many fond memories of our time together in Ohio, even though it was a short time. I recall that you are one of the first people that we met that Skylar didn’t scream at or run away from. She knew immediately that you were a kind soul. She has always been a good reader of people! I have truly enjoyed following you and your beautiful family on FB. Love you my friend!
I love you!!! I love Skylar!!! I am so happy for you that you are on this journey, and the community is blessed to have your voice. Your caring and humor and your heart are exceptional. Thank you for sharing you and your family with us. I look forward to keeping up with you this way. I miss you, and those girls on almost a daily basis!! (Some days are too busy to miss anyone!) MUAH!!! 🙂
Oh Sara…how I miss you my friend! You are such a big part of why I started blogging. You encouraged me to write & share so often. And although I don’t miss the actual job, I sure do miss working with you. Love to you!