A Letter From Kaden

Dear mom:

The day I was born was such a happy day! As you held me in your arms, I heard you say that you never knew you could love someone as much as you already loved me. As the days went on, there was so much happiness all around us. It seemed as if I brought so much joy to everyone’s life…especially to you & dad, my cousins, grandma, auntie’s and uncle’s! As the months went on, you and daddy celebrated every milestone.

Then one day, after my first birthday, things started to change. The overwhelming love was still very present, but I saw the worry in your eyes as I struggled to develop the way everyone thought I was “supposed” to. Then after months of testing and evaluations, we all realized that it was going to take a little more work from all of us to get me to where I was “supposed” to be.

So, we found out that our journey would be a little different than we had planned for. I’m here to tell you that it’s OK, and there are a few things I need you to know as we begin this journey together.

Don’t be sad. I know this may not be the journey you had pictured in your mind, and it certainly is not the journey most are on. But it is our journey, and we are on it together. Please continue to see the positive, rather than focusing on the things I’m not doing. Sure, there are things I struggle with, but I have so many strengths and the key to my development will be identifying those strengths and building on them. If you think this is hard for you, imagine how hard it must be for me.

Be strong. No, it’s not going to be easy. I need you to search inside and find every ounce of strength that you have. This is not the time to fall apart. I need you to pull it together, hold your head up high, and come up with a plan! There is no time to feel sorry for yourself, blame yourself, live in denial, or think that we can just keep “coasting” along. The time is now. I need you to see this for what it is, and act on it. I know it seems scary right now, but together we can do this!

Fight for me. I cannot do this by myself and I need you now more than I ever will! As we walk down this road together, there will be many battles. I am counting on you to be informed, challenge & navigate the systems, get me the best care possible, and learn as much as you can about my challenges. Don’t wait. Go seek out all of the information that you possibly can and if there is a chance something could help me, please pursue it! Research all that you can find. You may have never planned on getting that “Google PHD”, but now you must. Talk to the doctor’s, therapists, professionals and other parents. Get not only first, but second & third opinions and don’t settle for less than the best!

Take care of yourself. There are so many people who love me and want to help…let them. Don’t be afraid to ask for help, you cannot take everything on alone. Find support systems, they will help you get through this. Exercise, get rest, and try to eat well. You will need all of the energy you can possibly get! Take the time out for yourself, and make sure you and dad go on dates. It is important!

Be patient. Success will not happen overnight and that’s ok. This is a process, possibly a very long process. I will do my best, but please remember I am only 2 and there are a lot of demands which have been put on me. Provide me with all of the tools I need, allow me to grow, but remember that I need to do this at my own pace. This is not an easy road, but the rewards are tremendous!

Be Pro-active! There are so many wonderful resources out there, and so many ways to access information. But please know that the information will not fall into your lap. You have got to go get it! Network everywhere, share our story whenever possible, and listen as other people tell their stories. Ask a lot of questions, you can learn something from everyone’s experience. Don’t wait for the professional’s to call you back after days have gone by, instead call them. Persistence is ok, as long as it is with a smile! That’s one of the great things about us mom, we are happy and try to always have a smile on our face!

Trust your instincts. You will realize that you are the professional when it comes to me. You will hear so many different opinions, sometimes it will be frustrating. Respectfully listen to the experts in each field, value their expertise & knowledge, but remember that ultimately no one knows me better than you do. I trust that you will do what is best for me; you need to trust yourself too!

Never, ever give up on me. Never stop believing in me, and I will continue to amaze you day after day! As you know, there are so many strengths that come along with my challenges. Please continue to recognize those strengths, know that I will never give up, and neither can you! No matter what or who I become, I will always be me ~ the same little person you fell in love with the day you brought me into this world!

I may not be able to tell you this yet, but I love you & dad so much. I appreciate everything that you are doing now, and this will determine the person I become later in life.

Chaos, Inspiration & Developmental Milestones

Yes, I know…this is quite the title! There is so much to say and it has been so long since I have blogged. I have been caught up in the ever-so-wonderful chaos of life...it can seem so overwhelming at times. I often forget that one of the reasons I started this blog was to not only bring awareness to Kaden’s developmental disorder & progress, but also to help me cope with the day to day madness of it all. Things have been challenging lately, just like they often are for everyone. I don’t think my challenges are any more significant than anyone else’s, just different. Sometimes it feels easier to just go through the motions of it all, and it is easy to lose sight of what is really important.

I am constantly searching for inspiration…in school, in work, and life in general. Sometimes the most valuable inspiration one can find is the unexpected. I received a call from one of my oldest and dearest friends this morning. He called to tell me that he reads my blog and how great he thinks it is that I am sharing our experience. Our conversation was cut short, but his words meant so much to me and offered so much inspiration at a time I really needed it.

So much has been happening in Kaden’s world and we continue to see so much progress. His speech is really beginning to emerge, and he is really starting to get that he can put syllables together and form words. He is up to about 7 words now…mostly prompted but that’s ok. He does have some spontaneous words such as mama, dada, and yea yea. His Speech Therapist started doing DTTC therapy (Dynamic Temporal and Tactile Cueing for Speech Motor Learning Method) with him about a month and a half ago and it is amazing how well it is working for him. This is a very intense approach and is only successful if Kaden can attend to the ST’s mouth, which can be quite challenging for him. We have been working on this through behavioral therapy, and he is definitely starting to be able to attend longer.

All of the professionals who work with Kaden have suggested that he have a feeding/swallowing evaluation, as it has been clear for some time that he has some challenges in this area. We were finally able to have the evaluation on Friday, and it was very interesting. He definitely needs some feeding/swallowing therapy, which will be two times a week in addition to his current Speech Therapy. This kind of therapy is done by a Speech Therapist, but not the same one who does his DTTC therapy. A little confusing, I know!

So, his schedule continues to get busier but that only means that he continues to grow. We are seeing him meet more and more of his developmental milestones, which is the pay off for the hours and hours of therapy each week. People always tell Dave and I how amazing they think we are, but I always tell them that Kaden is the amazing one. He is the one who puts in all of the hard work, and constantly has such an incredibly willing & determined spirit. I am always learning from Kaden, and he has helped me grow so much as a person because of this journey we are on together.

Things may seem really crazy at times, and I often feel defeated by the various systems we fight every day to ensure Kaden has all that he needs. No matter what, I am committed to being strong through the chaos. I am committed to finding inspiration in everything we do. Most importantly, I will never stop celebrating every milestone Kaden reaches - no matter how big or small. This is what life is all about!

Have a great week!

Building the Foundation

It has been one week since we completed the JumpStart Program, and I am so excited to share our experience. This week has been a little crazy as we settled back into our “normal” routine. Having 12 units of school and being gone all of last week proved to be a little stressful…but I think I’m caught up now!

We received so much valuable information through the JumpStart Program, and so many tools for our whole family. I have spent a lot of time putting it all together and figuring out how we can use our experience to help Kaden be the best little person he can be.

One of the most important things I have learned on this journey is that there is a ton of accessible information out there. We have spent the last 6 months researching, paying close attention to Kaden’s therapist’s, talking to people, and listening to a variety of professionals. It has been frustrating at times, as there are so many different “camps” in this world. Most of the professionals in the Autism community have a very specific background and belief. They think that their way is the only way.

I have realized that as parents it is our job to take all of the information, filter through it, and hold onto what we see relevant to our situation. Then, we put it together in a way that will be most beneficial to Kaden. As I mentioned before, there is no manual or “road map” because every case of Autism looks so different on every kid.

I think of it like building the foundation of a house. We spent the last six months gathering the materials we needed to make the best foundation we could, and hoping we had all of the materials necessary to make this foundation as strong as it needs to be. There are times I have wondered if we had all of the correct materials, and I stayed up late at night wondering if we were doing this the right way.

This is where the JumpStart Program was so beneficial for us. The professionals at JumpStart took a close look at the foundation we have been working on over the last 6 months. Then, they gave us finishing touches to make this foundation as strong and solid as it could be. They helped us zone in not only on Kaden’s areas of opportunities, but also on his strengths and how we can start to build on this foundation. We left the program feeling empowered, and confident that we had the most solid foundation possible for Kaden’s future.

There are so many pieces to what is going on with Kaden. He has 5 different people working with him on a weekly basis, from all different areas. While they have all taught us so much, it has been our job to put all of it together. That can feel overwhelming at times. The JumpStart team really helped us to paint the “whole picture.” They didn’t look at our situation from just one aspect, and this was so refreshing!

Now the building begins! This is the most exciting part, watching Kaden flourish the past few months have been so incredibly rewarding! As we begin the process of transitioning Kaden to preschool, we feel so clear about what the next steps look like for him. This kind of clarity is invaluable! There really are no words to express how grateful we are to have been able to attend this program, and how grateful we are for the JumpStart Team.

If you know of a family who has a little one with Autism or PDD-NOS, I would love to share our experience with them. If they are in the Early Start Program, there are ways to get the Regional Center to fund this program and I would be more than happy to share how we did it!

Thank you for reading, and for all of your ongoing support!

JumpStart, Days 1&2

Wow, what an amazing experience our first 2 days at JumpStart have been! I can honestly say that after the first 2 days of this program I feel completely empowered and like we have an entire new set of tools to help Kaden grow, develop, and be the best he can be.

I was planning on blogging about the program after we completed the entire week. Well, after 2 days I feel like I already have so much I want to share so I decided I would break it up into a couple of entries. I don’t usually blog this much in such a short amount of time, but I felt it was important this time for two reasons. The first being that I have taken in so much information these last two days and this is helpful for me to recap everything we have learned. Second, this is all valuable information that needs to be shared with those who spend time with Kaden.

Our first 2 days were spent with Senior Behavioral Coach & Executive Director of JumpStart, Lina Fancy. I felt like after reviewing Kaden’s reports prior to us arriving, spending 2 hours with us Monday morning, Lina knew my son just as well as I did. She quickly identified his strengths,  his challenges, and came up with a game plan. One thing about Autism, is that there is no “one size fits all” road map. But, you search for this road map from the second you find out your child may have Autism. You are searching for any answers, and just hoping someone will give you some kind of direction. For the first time since all of this has emerged, I feel like we finally have a road map.

Kaden always presents as an “interesting” case to the professionals who see him. Six months ago there was no doubt in anyone’s mind that Kaden was definitely on the Autism Spectrum. In May he received his first Autism diagnosis. In August he received a “provisional” Autism diagnosis, meaning Dr. Maher was not completely convinced he had Autsim but went ahead and gave  him the diagnosis so he Kaden continue to receive the high level of services he was already getting. In the last month, every professional who works with Kaden doubts more and more that he is on the spectrum.

Call it what you want,I really do not care what the label is. My point is that  Kaden has made remarkable gains in the last six months and this is so promising. After this program, I can only imagine where Kaden will go with his development.

We have always known that the two biggest areas of opportunity for Kaden are his speech and social skills. One thing Lina quickly identified is that we need to set our expectations extremely high for Kaden. We need to push him hard because he is at a point where we will continue to see huge gains in his development.

Kaden does great in a non competing structured environment, where he is given the tools to be successful. When you put him in an intense social situation (ie. a lot of noise, unpredictable children, no structure) he becomes overwhelmed and at that point is unable to access his learning environment and escapes any interactions with other people.
This is where the work begins at home for us.

I have always known in my heart that we could make a difference in the overall outcome of Kaden’s development. After these first two days at JumpStart, I am more confident than ever in the places we can take Kaden.

I can sit here today and assure you that not only will Kaden catch up to his peers, but will outshine them in so many ways.

I am so grateful to have the opportunity to attend a program like JumpStart, and am so excited for the next three days!

Have a wonderful week, and thank you for reading!!!

It All Comes Together!

Dave and I were lucky enough to have a quick little 2 day get away last weekend with some friends. The kids stayed with grandma, auntie, and cousins while we were gone. As much as people constantly tell us we need a break, and I know in my heart this is true, it is still hard to leave. Especially with everything Kaden has going on.

What a pleasant surprise we came back to....Kaden was making so many new sounds after a weekend with his cousins. He was saying things we had never heard before. There are no words to describe the feeling of walking through the door and hearing him say "WOOOOWWWW, Ma-Ma!" As he says it, you hear pure excitement in his voice...it is the best!

Well, it has been 6 months since we started this journey with Kaden and Autism. I can honestly say that it feels like it is all starting to come together! All of Kaden's hard work,  all of the hours and hours of therapy. It is all shining through so bright!

To think that 6 months ago a stranger sat in my living room and told me that Kaden showed all of the "red flags" of Autism. I asked her if she had ever seen these behaviors or "red flags" disappear after she had seen them in a child at first, and she told me "no." She also told me not to expect to see changes over night and that  while we would set 6 month goals for him, not to expect him to reach all of those goals.

Well, here we are 6 months later and I can proudly say that Kaden has reached every single goal outlined for him on his IFSP (Individualized Family Service Plan), and then some! 

HA...TAKE THAT AUTSIM!!!!

Kaden at speech taking a break

In 6 months he has learned to communicate his needs, mimic behaviors, follow  two- three- four & more word commands, he babbles constantly, mimics sounds, is able to interact & self regulate in a social setting with his peers, say some words, concentrate on a project for not only seconds but minutes, uses sign language on a regular basis, and SO MUCH MORE!

Every single person who has worked with him cannot believe his progress and the developmental gains he has made in such a short amount of time. Last week his case worker saw him for the first time in a few months and she was absolutely blown away.

The Developmental Pediatrician who initially diagnosed him in May told us his therapists would love working with him because he had so much potential. She could not have been more right on!

So what do we do now that his 6 month review is here? We keep going. We keep doing what we have been doing and then some. This is why we have a week long intensive family program at the end of this month scheduled in SF, we have an appointment at UC Davis MIND Institute & at UCSF Autism & Neurology Clinic in October, and we have just started the Generation Rescue Grant Program. We keep him on the strict diet, supplements, and continue to give him the tools he needs to be present.

It may take a little more work than most, but this is why we do it. We have always seen the potential and continue to see the potential in Kaden underneath all of the "Autism" stuff. He is such an amazing little person, and already exceeding everyone's expectations for him. I can only imagine the places he will go. Yes, he may need a little extra direction getting there. But once he is there, we will all look back and remember this as a few bumps in the road as we started our journey.

I know in my heart that because of everything we are doing now he is going to come out so far ahead! For now, we keep fighting and celebrate Kaden's milestones as everything starts to come together!

Kaden is definitely able to mimic!

Kaden's Life in Pictures

One of my closest friends growing up loved to take pictures, and is now a very successful photographer. She was constantly posing us all through high school, documenting every memory we made. This grew on me, and naturally I learned to love pictures as well. But it wasn’t until very recently that I realized the true power of a picture.

When we first started to recognize some of the challenges Kaden is facing, everyone told me that it would be so important to figure out what his strengths are and build on those. After so many evaluations, assessments, and people placing Kaden’s every little behavior under a microscope, it has been so wonderful to see his little world open up and help him find his strengths. He has so many!

Through this whole process everyone who has worked with him has told us he is very visual. He may not talk, he may have a hard time organizing & processing everything as it comes into his brain, but he is somewhat of a visual genius (those are MY words!) When he started learning PECS (using pictures to communicate his needs), his speech therapist could not believe how fast he learned them. The more he started using PECS to communicate, the more he began to sign and make noises. Today the school psychologist came out to our house and said she has never seen a kiddo as young as Kaden using PECS so efficiently. He is speaking in sentences, with pictures!

Our house is now completely visual. He has his PECS book which we take everywhere with us. That means that we have to know where we are going in advance and I have to have pictures of everything he will have access to. He has a “please” and “I want” picture as well, and he has to use those when communicating what it is that he wants.

He has a magnetic PECS board in each room of our house. So, in the kitchen his board is hanging on the wall and includes everything he could want in the kitchen. We did this because it would have been too many pictures in his book, so we decided his book could be more mobile.

In addition to his PECS book and boards, we have set up a daily schedule board for him. It is a huge dry-erase board that hangs in our living room. We have pictures with magnets on the back in the time slots of everything we are going to do in that day. As we go through our day, he takes down the pictures and places them in the “all done” envelope at the bottom of the board. This board really helps him transition through his day with less anxiety…knowing what to expect is so important for Kaden.

We have started to introduce “social stories.” These are little books of all of his different routines. For example, his social story for bedtime will have pictures of everything he does during his routine. “Kaden brushes his teeth” and next to it will be a picture of Kaden brushing his teeth.

It sounds like a lot, and at times it is. It is a lot of planning and discipline for all of us. With that being said, it is so worth it to see him as he learns to communicate and function in his day to day life without all of the frustration one must feel from not being able to talk. He wants to communicate so badly, and now that we are giving him the tools to do so his whole world has changed.

I think it is ironic that 2 years ago it was Kaden who was one of my biggest inspirations to study graphic design. I have been told that I have a “keen eye” when it comes to graphic design. Well now I get to take all I know from my inner creative toolbox, and create visuals to help Kaden in his development. I have worked on a lot of wonderful design projects in the last couple of years, but not one of them has been as important as this one.

Without the pictures in Kaden’s life we would still be trying to anticipate his needs and he would still be extremely frustrated. Next time you snap a picture, remember that in someone’s life a simple picture could be making a world of difference!