This is the time of year that we all take some time to reflect on what we have to be thankful for, and acknowledge how much gratittude we have in our hearts. This journey we are on comes with a lot of hard work and emotions, and it is easy to get lost and consumed in this. I try to be conscious of my day to day attitude and keep my perspective in check, but sometimes that proves to be challenging. The emotions that come with Autism, or any developmental delay, are hard on the heart and it takes a lot of effort to stay positive.
So, I love this time of year because it is only natural to focus on all of the many things we do have to be thankful for. The are really no words to express the gratuitude I feel in my heart each and every day, but I can tell you a little bit about what those things are.
I am thankful for two amazing children who have taught me more than I could have ever imagined about myself, life, love, and family. As I mentioned above, this journey is not always easy, but there isn't a day that goes by that I look at those two little faces and don't appreciate each and every moment. This may not be the journey we anticipated so long ago, but it is definitely the journey for us, and I would not trade it for anything.
I am thankful for my family and friends. I am thankful for everyone of our family and extended family, my mom, sister, nieces & nephews, and to all of my friends who have remained close on this rocky road. I would not be as strong as I am, and Kaden certainly would not be where he is today, if it weren't for you. You have lifted me up when I was down, and supported us in ways that have made it possible for me to be the mother that I am today. Thank you.
To all of the therapists & teachers who dedicate their lives to helping Kaden and so many other kids...I know what you deal with day in and day out is not easy. You get spit on, kicked, bit, and you still continue to do your job with an open heart and wide arms. You are amazing. Kaden is so lucky to be working with a team of professionals that not only are some of the best in their field, but the passion they have for what they do shines through in their work.
I am especially thankful for the progress Kaden has made and the little man he is becoming. The language has started to really emerge in these last couple of months, and it has been so amazing to watch his little world open up and learn more every day about who he is as a person. For the first time, we are seeing his personality shine through in words, something we have hoped for each & every day. He has a fairly strong single word vocabulary now, and is putting together two and sometimes even three words.
I am incredibly thankful for a few things that have happened recently, and will make such a difference in Kaden's life. One of the most important things I learned on this journey is that you have to go out and find resources, they will not fall into your lap. Often, you will have to work hard and be persistent to access these resources, as there are so many children in need.
A few months ago I was up late one night doing my "normal" researching at late hours. I stumbled across a grant opportunity through Unuted HealthCare Children's Foundation. It quickly caught my attention and immediately I went to the page to see if we met the criteria. It is a grant designed for families that have medical insurance but need assistance paying for therapy not covered by insurance, or any out of pocket expenses (i.e., co-pays, deductible, etc). So, of course once I saw that we did meet the criteria I applied. It required that you have a written letter from the child's Pediatrician, and about every other piece of documentation you could imagine. So, I quickly sat down and got to work. I even wrote a letter for the Pediatrician, lucky for us he agreed to sign it and I was able to send all of the paperwork off the next day. Two weeks ago we received a letter in the email that Kaden had been rewarded the grant!!!!! I was beyond excited. This summer, Kaden's Neurologist recommened music therapy for Kaden and thought it could really help him. We started going in July, and we saw some amazing progress from just a short month. But after a month we ended up having to stop because we could not afford it with all of Kaden's other treatment. I was so determined to find a way to allow him to go back, and this grant was the perfect answer. So, last week we started bringing him back to Developmental Rhythms for music therapy! These are the little victories along this journey that keep me going!
Kaden was recently chosen to participate in a pilot program through SCOE (Sonoma County Office of Education) called "First Words." The model used in this program is called Pivotal Response Training, and you can learn more about it here http://education.ucsb.edu/autism/prt.html. I will just say that PRT has been incredibly successful with children between the ages of 3-5 with Autism. There are some very promising studies especially this recent study out of Yale http://news.yale.edu/2012/11/06/early-treatment-sparks-striking-brain-changes-autism which shows actual physical changes in the brain of children with Autism who received PRT. It is all very exciting and promising stuff, just another reason to be incredibly thankful. So, Kaden started PRT on Monday and will be doing it until February. His teacher from his Special Day Class will be participating in the treatment with him and will be trained to carry PRT over into the classroom. I will definitely keep you updated on his progress as we go through this program.
Lastly, I am extremely thankful for the opportunities I have recently been given which are allowing me to give back and make a difference in the Special Education community. In September I started serving as Chair for the CAC (Community Advisory Committee) http://www.sonomaselpa.org/selpa/docs/cac_english.pdf which is an organization through SELPA that basically works as a link between parents and school districts. We inform, educate, and advocate for families with children os special needs. Through this organization I have also had the privilege of working on a more intimate level with the school districts in the county, thus offering a much different perspective which will ultimately help facilitate a stronger relationship as we work with the district to get Kaden the services he needs moving forward. I am so excited to be a part of something so incredibly powerful for families, and I hope to make a difference.
Please don't forget to take the time this Holiday season and focus on what you DO have to be thankful for. Life is not easy, and we can all become so focused on the day to day challenges we face. Take a minute to look at your kids, your family, and all that you have to be thankful for. There is so much!
Thank you following us on our journey, and have a wonderful Thanksgiving!
About Me
Wednesday, November 21, 2012
Thursday, September 13, 2012
Keep on Searching
"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!
Friday, August 10, 2012
The Power of Communication
I have been so immersed in life, that I did not realize until today how long it had been since my last blog update. SO much has been happening in Kaden's World these last 6 weeks, and his progress has been astounding! I am so excited to share with everyone.
As his Special Day Class summer session came to a close last month, I spent a lot of time talking with his teachers and reflecting on what an amazing little person Kaden is. This little guy has very limited vocabulary, yet has been able to make connections and build relationships with his peers. His teacher called me one day because she just had to tell me about a couple of interactions Kaden had at school that blew her away.
There is one little boy in Kaden's class that he had grown particularily close with, and one day at circle time that same little boy stood up and said "I LOVE you Kaden, you are my best friend." On another day, one of the aides in his class sent home a video on a flash drive for me. My heart filled with pure joy as I sat and watched a little blonde haired girl sitting cross legged on a bench in the outside play area. Kaden and another boy were picking flowers and bringing them to her. Before I knew it, this little girl had a hand full of flowers holding them close to her chest. Kaden and his friend ran back and forth, picking her flowers and bringing them to her. After her hands were full, Kaden sat down next to her and just watched as all of the other children played. They sat still together, as if they were having some sort of communication with no words at all.
As a parent, one of the most fundamental things you want for your children is for them to build meaningful and effective relationships. I suppose this is particularly something that parents of a child with an Autism Spectrum hopes for, as this is often a challenge for these kiddos. For Kaden to have such a limited vocabulary, and still be able to build these types of connections with his peers is pretty amazing!
So just as I was feeling overwhelmed with joy at Kaden's social progress, despite his speech & language challenges, something amazing happened. It was a Saturday night and we had been at the fair watching his cousins show their pigs all day. We were all tired. Kaden and Ayla were sitting on the couch, as I thought about what I should cook them for dinner. I looked over at Kaden and I said "hey, what do you want for dinner?" I have asked this question a million times, never expecting an answer of course. Just as I was getting ready to answer the question for him, he looked up at me and said "grilled cheese." My jaw just about hit the floor. Did he really just answer me? Kaden has never answered a question except for "yes" or "no." I looked at him and I said "Kaden, did you just say grilled cheese?" His face lit up with the biggest smile as he started jumping up and down saying "YES,YES,YES!!!"
The next morning the kids were at my mom's house and my mom called me at work around 10am. She told me that Kaden had went and fetched two eggs out of the refrigerator, brought them to her and said "cook." From this point on, more words started coming, and he even started putting words together. He started putting "I want" in front of words, a concept I had no idea he understood. Now I wake to him every morning saying "I want juice." Of course, I still have to do some serious prompting to get the "please" on the end, but hey ~ he is three after all!
I'm not sure which brings more joy to my heart - the fact that he is starting to use words to get his needs met, or the way his face lights up when he realizes he does get his needs met when he uses the words. He gets so excited as he gets the words out, he realizes the power in his words. Even more, he loves the positive reaction he gets when he uses his words. This is all very promising.
Kaden's Pediatric Neurologist at UCSF recommended a form of music therapy for Kaden, something that she thought would be extremely beneficial for him. She felt that with Kaden's motor planning and sequencing challenges that the rhythm of the music might really help him start to put things together. Three weeks ago he had his first visit with Pierre Brennan, Developmental Rhythms http://developmentalrhythms.com/. This has been amazing for Kaden. He really responds to the music that Pierre incorporates in his behavioral therapy, and his having so much fun. It is music to my ears when I am driving and hear Kaden in the back seat singing the ABC's. WHO KNEW? Of course, he doesn't have the letters down but you can definitely tell what it is he is trying to sing.
As always, he just continues to amaze us day after day. His progress, his spirit, and his energy. Watching him put the pieces of this puzzle together has to be one of the most rewarding things as a parent. There is not one day that goes by that we do not appreciate how much this little man has taught us about life and how precious every little piece of it is. For Kaden, learning the power of communication has opened up a whole new world for him. For us, finally hearing his voice is one of the greatest sounds in the world!
As his Special Day Class summer session came to a close last month, I spent a lot of time talking with his teachers and reflecting on what an amazing little person Kaden is. This little guy has very limited vocabulary, yet has been able to make connections and build relationships with his peers. His teacher called me one day because she just had to tell me about a couple of interactions Kaden had at school that blew her away.
There is one little boy in Kaden's class that he had grown particularily close with, and one day at circle time that same little boy stood up and said "I LOVE you Kaden, you are my best friend." On another day, one of the aides in his class sent home a video on a flash drive for me. My heart filled with pure joy as I sat and watched a little blonde haired girl sitting cross legged on a bench in the outside play area. Kaden and another boy were picking flowers and bringing them to her. Before I knew it, this little girl had a hand full of flowers holding them close to her chest. Kaden and his friend ran back and forth, picking her flowers and bringing them to her. After her hands were full, Kaden sat down next to her and just watched as all of the other children played. They sat still together, as if they were having some sort of communication with no words at all.
As a parent, one of the most fundamental things you want for your children is for them to build meaningful and effective relationships. I suppose this is particularly something that parents of a child with an Autism Spectrum hopes for, as this is often a challenge for these kiddos. For Kaden to have such a limited vocabulary, and still be able to build these types of connections with his peers is pretty amazing!
So just as I was feeling overwhelmed with joy at Kaden's social progress, despite his speech & language challenges, something amazing happened. It was a Saturday night and we had been at the fair watching his cousins show their pigs all day. We were all tired. Kaden and Ayla were sitting on the couch, as I thought about what I should cook them for dinner. I looked over at Kaden and I said "hey, what do you want for dinner?" I have asked this question a million times, never expecting an answer of course. Just as I was getting ready to answer the question for him, he looked up at me and said "grilled cheese." My jaw just about hit the floor. Did he really just answer me? Kaden has never answered a question except for "yes" or "no." I looked at him and I said "Kaden, did you just say grilled cheese?" His face lit up with the biggest smile as he started jumping up and down saying "YES,YES,YES!!!"
The next morning the kids were at my mom's house and my mom called me at work around 10am. She told me that Kaden had went and fetched two eggs out of the refrigerator, brought them to her and said "cook." From this point on, more words started coming, and he even started putting words together. He started putting "I want" in front of words, a concept I had no idea he understood. Now I wake to him every morning saying "I want juice." Of course, I still have to do some serious prompting to get the "please" on the end, but hey ~ he is three after all!
I'm not sure which brings more joy to my heart - the fact that he is starting to use words to get his needs met, or the way his face lights up when he realizes he does get his needs met when he uses the words. He gets so excited as he gets the words out, he realizes the power in his words. Even more, he loves the positive reaction he gets when he uses his words. This is all very promising.
Kaden's Pediatric Neurologist at UCSF recommended a form of music therapy for Kaden, something that she thought would be extremely beneficial for him. She felt that with Kaden's motor planning and sequencing challenges that the rhythm of the music might really help him start to put things together. Three weeks ago he had his first visit with Pierre Brennan, Developmental Rhythms http://developmentalrhythms.com/. This has been amazing for Kaden. He really responds to the music that Pierre incorporates in his behavioral therapy, and his having so much fun. It is music to my ears when I am driving and hear Kaden in the back seat singing the ABC's. WHO KNEW? Of course, he doesn't have the letters down but you can definitely tell what it is he is trying to sing.
As always, he just continues to amaze us day after day. His progress, his spirit, and his energy. Watching him put the pieces of this puzzle together has to be one of the most rewarding things as a parent. There is not one day that goes by that we do not appreciate how much this little man has taught us about life and how precious every little piece of it is. For Kaden, learning the power of communication has opened up a whole new world for him. For us, finally hearing his voice is one of the greatest sounds in the world!
Friday, June 22, 2012
Simply The Best
I haven't posted in a while...there has just has just been so much going on. It has been a month and a half packed full of progress, changes, and huge accomplishments.
Kaden's regular school year finished a few weeks ago, and he has since started a summer program. The progress we have seen in Kaden since he started school in March has been amazing, and we are continuing to see more progress each and every day. It's as if a whole new world opened up for him, and he is slowly coming out of his world of "Autism." I know, we have been saying that for the last year, but I honestly cannot believe the significant changes we are seeing in him on a day to day basis.
He is using so many more words to communicate, and even starting to put two words together. He is able to express wit and humor in his communication, just the other day I said to him "Kaden, you are getting so big. You are growing up!" and he said "no mom, DOWN!!!!" and at the same time he squatted down and then jumped back up. We both laughed, and I could not believe what he had just done. These are the moments I live for!
So, his regular school year ended and he has since started an extended school year program. We also got a call from Early Learning Institute and they had an opening for their afternoon preschool, which Kaden has been on the waiting list to get into. So, he is now going to school for 7 hours on Tuesday's and Thursday's. He goes to his special day class Tues-Fri from 9-1 and then on Tues/Thur after his morning class I take him down to ELI in Rohnert Park until 4pm. This is in addition to his outside Speech Therapy, Occupational Therapy, and in home Behavioral Therapy. Yes, intense for a 3 year old!!! But just as we anticipated, he is thriving more than ever. He is such an amazing little man, and the more we throw at him the more he continues to impress us.
We still have some things to work out on the IEP front...it's been 4 months and we still have not signed off on the speech portion of the IEP. The school district's opinion on what is most appropriate for Kaden is not consistent with what we know Kaden needs. We have been waiting months to get him in to see his Pediatric Neurologist at UCSF, in hopes that she would give him an Apraxia diagnosis to better support the recommendations that have been made from his Speech Therapist and Developmental Pediatrician.
So in true form, I spent hours preparing data from previous reports, my own research on the subject, and why I thought an Apraxia diagnosis would be appropriate for him at this time. I communicated all of this via email with the Pediatric Neurologist (Dr. Marco), and when we went to see her last week. After reviewing the information I provided to her, and doing her own neurological evaluation, she said that it seemed as if we were right on track with what Kaden needs. So, she made it official and gave him an Apraxia diagnosis! Again, one of those moments that I felt as if I was on top of the world!!!
So, now he has an Apraxia diagnosis...what does this mean and what is apraxia? Basically, the school district has not felt as if Kaden's speech delay is primarily a motor planning type speech delay, and they have felt it is best to treat it as a typical speech delay. Research clearly states that motor type speech delays (Apraxia) are treated very different than your typical phonological speech delay. This type of speech delay requires a much more intensive speech program, typically 1:1, 3-5 times a week for at least 30 minutes each session. So, now it all comes down to the data.
I recently contacted a representative SELPA (who acts as a mediator between the school district and the family), and he is confident that our latest evaluation from UCSF should be exactly what we need to get the school district to finally comply with what we are asking for as it relates to Kaden's speech therapy program. This parent advocate has been extremely helpful, and I am so grateful that these programs are in place to help families fight for what is appropriate for their children. As a parent you would never think it would be so challenging to get what is most appropriate for your child, but just as with everything else it comes down to money and man power. The schools don't have money, therefore it is up to the families to fight tooth & nail to get what their children need. Without the fight, your child is most likely going to get the bare minimum from the school district.
As most of you know, we don't settle for the "bare minimum." Kaden deserves better than that, and we are going to always make sure he gets the best!!!
Kaden's regular school year finished a few weeks ago, and he has since started a summer program. The progress we have seen in Kaden since he started school in March has been amazing, and we are continuing to see more progress each and every day. It's as if a whole new world opened up for him, and he is slowly coming out of his world of "Autism." I know, we have been saying that for the last year, but I honestly cannot believe the significant changes we are seeing in him on a day to day basis.
He is using so many more words to communicate, and even starting to put two words together. He is able to express wit and humor in his communication, just the other day I said to him "Kaden, you are getting so big. You are growing up!" and he said "no mom, DOWN!!!!" and at the same time he squatted down and then jumped back up. We both laughed, and I could not believe what he had just done. These are the moments I live for!
So, his regular school year ended and he has since started an extended school year program. We also got a call from Early Learning Institute and they had an opening for their afternoon preschool, which Kaden has been on the waiting list to get into. So, he is now going to school for 7 hours on Tuesday's and Thursday's. He goes to his special day class Tues-Fri from 9-1 and then on Tues/Thur after his morning class I take him down to ELI in Rohnert Park until 4pm. This is in addition to his outside Speech Therapy, Occupational Therapy, and in home Behavioral Therapy. Yes, intense for a 3 year old!!! But just as we anticipated, he is thriving more than ever. He is such an amazing little man, and the more we throw at him the more he continues to impress us.
We still have some things to work out on the IEP front...it's been 4 months and we still have not signed off on the speech portion of the IEP. The school district's opinion on what is most appropriate for Kaden is not consistent with what we know Kaden needs. We have been waiting months to get him in to see his Pediatric Neurologist at UCSF, in hopes that she would give him an Apraxia diagnosis to better support the recommendations that have been made from his Speech Therapist and Developmental Pediatrician.
So in true form, I spent hours preparing data from previous reports, my own research on the subject, and why I thought an Apraxia diagnosis would be appropriate for him at this time. I communicated all of this via email with the Pediatric Neurologist (Dr. Marco), and when we went to see her last week. After reviewing the information I provided to her, and doing her own neurological evaluation, she said that it seemed as if we were right on track with what Kaden needs. So, she made it official and gave him an Apraxia diagnosis! Again, one of those moments that I felt as if I was on top of the world!!!
So, now he has an Apraxia diagnosis...what does this mean and what is apraxia? Basically, the school district has not felt as if Kaden's speech delay is primarily a motor planning type speech delay, and they have felt it is best to treat it as a typical speech delay. Research clearly states that motor type speech delays (Apraxia) are treated very different than your typical phonological speech delay. This type of speech delay requires a much more intensive speech program, typically 1:1, 3-5 times a week for at least 30 minutes each session. So, now it all comes down to the data.
I recently contacted a representative SELPA (who acts as a mediator between the school district and the family), and he is confident that our latest evaluation from UCSF should be exactly what we need to get the school district to finally comply with what we are asking for as it relates to Kaden's speech therapy program. This parent advocate has been extremely helpful, and I am so grateful that these programs are in place to help families fight for what is appropriate for their children. As a parent you would never think it would be so challenging to get what is most appropriate for your child, but just as with everything else it comes down to money and man power. The schools don't have money, therefore it is up to the families to fight tooth & nail to get what their children need. Without the fight, your child is most likely going to get the bare minimum from the school district.
As most of you know, we don't settle for the "bare minimum." Kaden deserves better than that, and we are going to always make sure he gets the best!!!
Friday, May 4, 2012
Always Searching
We have had the opportunity to meet some amazing people since we have started this journey with Kaden. One of Kaden's teachers, who has since become a dear friend, said something once that I will never forget. I would often talk to her about our many trials & tribulations as we faced them, as we searched for answers, and attempted to find the absolutely best care for Kaden.
One day as we were talking, she told me that we are "always searching." This really hit home for me, because there was so much truth to what she said. From the day I suspected Kaden was not typically developing, I have been searching. We search for information, answers, tools that will help him, the best care for him, strength within ourselves to get him through through the hard times, and a million other things. It can be exhausting, but we never stop searching because the second that we do, we might miss something that could be crucial for Kaden and his development.
We constantly search for answers, and I have learned that no one has them. No Speech Therapist, Occupational Therapist, Developmental Pediatrician or Neurologist can give us the answers we are searching for because they just don't know. I have had to learn to accept this, know that we are the experts when it comes to Kaden, and instead of focusing on finding the answers we need to focus on the behaviors & how to help him develop in the most effective way possible.
Recently, I have struggled with our search for Kaden's classroom placement, and to ensure he is in the most developmentally appropriate classroom. See, when we search for the "appropriate" classroom placement for Kaden we can't just look at school statistics, test scores, etc. like parents of typically developing children are able to do. We have to look far beyond the surface. Here are just a handful of the most important things we have to investigate when considering classroom placement for Kaden:
I think everyone on this planet is always searching for something. Our search is no more or less important than anyone else's...just different, and the consequences feel so pressing. The stakes are high, and this time in Kaden's development is so crucial.
The search is only a part of this wonderful world of Autism. With the search comes the fight. Let me tell you, we fight as much as we search and it is equally as exhausting. The systems we are up against are broken, have no money, and unfortunately their best interest is not always in the child (more often than not it is in the best interest of the budget).
Last week I hit a wall and was feeling defeated. I was tired of fighting and searching. Last Sunday one of my life-long friends had a benefit for Kaden, and this was just what I needed to get my fire back. It was amazing that so many people came out to support Kaden and Autism. People we didn't even know from all different places and walks of life. My family & friends came and helped us all day long, showing their deep love and support for Kaden and our journey. Brenda, thank you. I know you worked your butt off to put this together, and ran around crazy all day making it happen. My heart is so full of gratitude, and I am ready to push through this fight to make sure my little man has the best life possible!
Where there may be no answers, there is a light that shines bright and will direct you to wherever it is you need to go....no matter what challenges you face in life.
May you all find peace and happiness as you search for whatever it is you may be searching for in life.
One day as we were talking, she told me that we are "always searching." This really hit home for me, because there was so much truth to what she said. From the day I suspected Kaden was not typically developing, I have been searching. We search for information, answers, tools that will help him, the best care for him, strength within ourselves to get him through through the hard times, and a million other things. It can be exhausting, but we never stop searching because the second that we do, we might miss something that could be crucial for Kaden and his development.
We constantly search for answers, and I have learned that no one has them. No Speech Therapist, Occupational Therapist, Developmental Pediatrician or Neurologist can give us the answers we are searching for because they just don't know. I have had to learn to accept this, know that we are the experts when it comes to Kaden, and instead of focusing on finding the answers we need to focus on the behaviors & how to help him develop in the most effective way possible.
Recently, I have struggled with our search for Kaden's classroom placement, and to ensure he is in the most developmentally appropriate classroom. See, when we search for the "appropriate" classroom placement for Kaden we can't just look at school statistics, test scores, etc. like parents of typically developing children are able to do. We have to look far beyond the surface. Here are just a handful of the most important things we have to investigate when considering classroom placement for Kaden:
- The teacher and teaching style.
- How many teachers and assistants are there in the classroom?
- How many children or "peer models" are in the class, what kind of energy each of those children are bringing to the class as well as their strength & weaknesses.
- Is the classroom set up for fine and gross motor activities, as well as sensory activities?
- Are they using pictures schedules for the children?
- Do they have systems set up for transitioning the children between activities?
- How does the program incorporate communication/speech and language development?
I think everyone on this planet is always searching for something. Our search is no more or less important than anyone else's...just different, and the consequences feel so pressing. The stakes are high, and this time in Kaden's development is so crucial.
The search is only a part of this wonderful world of Autism. With the search comes the fight. Let me tell you, we fight as much as we search and it is equally as exhausting. The systems we are up against are broken, have no money, and unfortunately their best interest is not always in the child (more often than not it is in the best interest of the budget).
Last week I hit a wall and was feeling defeated. I was tired of fighting and searching. Last Sunday one of my life-long friends had a benefit for Kaden, and this was just what I needed to get my fire back. It was amazing that so many people came out to support Kaden and Autism. People we didn't even know from all different places and walks of life. My family & friends came and helped us all day long, showing their deep love and support for Kaden and our journey. Brenda, thank you. I know you worked your butt off to put this together, and ran around crazy all day making it happen. My heart is so full of gratitude, and I am ready to push through this fight to make sure my little man has the best life possible!
Where there may be no answers, there is a light that shines bright and will direct you to wherever it is you need to go....no matter what challenges you face in life.
May you all find peace and happiness as you search for whatever it is you may be searching for in life.
Sunday, April 1, 2012
How Was Your Day?
As many of you know, Kaden turned three this month and started pre-school. He is attending a special day class, with an excellent teacher and wonderful assistants. It is a very eclectic group of kids which we felt would be the perfect mix for him at this time.
This last week was his second week of school, and he absolutely loves it! There was a lot of excitement and smiles for him, and lots of tears for mom! I cried the first day when I dropped him off, I cried the day his teacher told me he was the "star" of the class, and I cried the first time he rode the bus.
I have been with this little man every day all day since the day he entered this world. I have brought him to therapy appointments, picked him up, and known exactly which questions to ask him to prompt him. Although he cannot talk to me, I have always felt like we communicate.
So I must say, the single hardest thing for me about him starting school is being away from him for four hours, and him not being able to tell me how his day was. The first day I picked him up off the bus I will never forget the look on his face. He was so excited to be riding the bus, and equally as excited when he saw me and Ayla waiting for him. When I got him inside, I starting asking a million questions. He answered "yes" to all of them, and I quickly realized that I didn't know which questions to prompt him, because for the first time ever I did not know what he had been doing for the last four hours. It broke my heart to think that he could have done something really fun & exciting at school, but could not tell me about it. I couldn't ask him about it, because I had not been there.
On Friday as we walked out our front door there was a pack of wild turkeys in our yard. Kaden was so excited...he started trying to whistle and call them like he does the dogs. We sat there for about 10 minutes talking about the turkeys and trying to say "gobble." He was so excited, he started grunting like he does when he gets excited about something. As we left for the bus I thought to myself "geeze, he is so excited about these turkeys he saw, and he won't be able to tell his teachers when he gets to school." So when he went to get on the bus I asked the bus driver if he would give the teacher a note for me and he said of course. I wrote the following note:
Teacher Karen & Assistants:
"Kaden saw a pack of wild turkeys this morning and was very excited...will you please make sure you ask him about them?!"
It probably made no difference to Kaden, but it sure made me feel better! This week Betsy (she is the behavioral therapist that works with Kaden a lot) is going into his classroom to take pictures of all of the kids and activities they do. I emailed Teacher Karen and asked for a song list of songs they sing at circle time, this way when he comes home from school we can look at pictures together and I can ask him specific questions about his day which will hopefully prompt more "conversation."
Once again, another little lesson about the things in life we often take for granted. Stop and tell someone about your day...they may want to hear it more than you could imagine.
Have a great week!
This last week was his second week of school, and he absolutely loves it! There was a lot of excitement and smiles for him, and lots of tears for mom! I cried the first day when I dropped him off, I cried the day his teacher told me he was the "star" of the class, and I cried the first time he rode the bus.
I have been with this little man every day all day since the day he entered this world. I have brought him to therapy appointments, picked him up, and known exactly which questions to ask him to prompt him. Although he cannot talk to me, I have always felt like we communicate.
So I must say, the single hardest thing for me about him starting school is being away from him for four hours, and him not being able to tell me how his day was. The first day I picked him up off the bus I will never forget the look on his face. He was so excited to be riding the bus, and equally as excited when he saw me and Ayla waiting for him. When I got him inside, I starting asking a million questions. He answered "yes" to all of them, and I quickly realized that I didn't know which questions to prompt him, because for the first time ever I did not know what he had been doing for the last four hours. It broke my heart to think that he could have done something really fun & exciting at school, but could not tell me about it. I couldn't ask him about it, because I had not been there.
On Friday as we walked out our front door there was a pack of wild turkeys in our yard. Kaden was so excited...he started trying to whistle and call them like he does the dogs. We sat there for about 10 minutes talking about the turkeys and trying to say "gobble." He was so excited, he started grunting like he does when he gets excited about something. As we left for the bus I thought to myself "geeze, he is so excited about these turkeys he saw, and he won't be able to tell his teachers when he gets to school." So when he went to get on the bus I asked the bus driver if he would give the teacher a note for me and he said of course. I wrote the following note:
Teacher Karen & Assistants:
"Kaden saw a pack of wild turkeys this morning and was very excited...will you please make sure you ask him about them?!"
It probably made no difference to Kaden, but it sure made me feel better! This week Betsy (she is the behavioral therapist that works with Kaden a lot) is going into his classroom to take pictures of all of the kids and activities they do. I emailed Teacher Karen and asked for a song list of songs they sing at circle time, this way when he comes home from school we can look at pictures together and I can ask him specific questions about his day which will hopefully prompt more "conversation."
Once again, another little lesson about the things in life we often take for granted. Stop and tell someone about your day...they may want to hear it more than you could imagine.
Have a great week!
Sunday, March 11, 2012
Full Circle
As I stood outside one of my classrooms last week on a break, I remembered being in that exact same spot one year ago, on the phone as I scheduled Kaden's very first appointment for therapy. I will never forget how unsure and scared I was at that time, but so excited to talk to this therapist who had already identified so many of Kaden's challenges and strengths. Finally, someone who understood him like we did.
Last week I got an email from that same therapist that read:
"Kristie, Here is the report for Kaden. The progress he has made over the last 10 months is nothing short of amazing."
As his final evaluation reports started coming in last week, they all brought tears to my eyes. Not just because of the remarkable progress he has made, but because of the things his therapists said about what a wonderful little boy Kaden is. They all mentioned how bright Kaden is. The teachers of his groups said he brought so much joy and good energy, and that he is such a happy little guy. I absolutely loved reading his reports.
A lot of people who are not familiar with the way the system works have asked me why he is getting final evaluations. To sum it up, when Kaden was first evaluated he received services through the Early Start Program which is state funded. In addition to that, our private insurance covered some of his speech. Well now that he is three, the state hands him off to the school system and we begin the IEP process.
IEP-Individual Educational Plan
Last week we had our 1st IEP meeting for Kaden. Four hours of 3 school officials who have never met Kaden, trying to find the most "appropriate" placement for Kaden.. So, the school journey begins. Kaden is only 3 and doesn't have a voice yet. The closest thing he has to a voice is us, and that is why we are going to advocate fight until the end to get him exactly what he needs. No one said this would be easy, but so worth it in the end!
The great news is that he starts attending a special day class tomorrow. He will go 4 days a week, 4 hours each day. In addition to that he will have his behavior therapist with him at school one day a week, work with him in our home two afternoons a week, and continue his speech therapy 3 times a week. He will get additional Occupational Therapy and Speech Therapy in the classroom.
This is a huge transition time for him...for us to. I am finding out that I struggle with transitions just as much (if not more) as Kaden does! But he is so incredibly excited to start school, and we know this is where he will thrive. He will use his ipad in the classroom to assist with communication and will also use a picture schedule on his ipad to help him throughout his day.
We look forward to sharing his progress in the upcoming weeks!
Thanks for reading and have a wonderful week!!!
Last week I got an email from that same therapist that read:
"Kristie, Here is the report for Kaden. The progress he has made over the last 10 months is nothing short of amazing."
As his final evaluation reports started coming in last week, they all brought tears to my eyes. Not just because of the remarkable progress he has made, but because of the things his therapists said about what a wonderful little boy Kaden is. They all mentioned how bright Kaden is. The teachers of his groups said he brought so much joy and good energy, and that he is such a happy little guy. I absolutely loved reading his reports.
A lot of people who are not familiar with the way the system works have asked me why he is getting final evaluations. To sum it up, when Kaden was first evaluated he received services through the Early Start Program which is state funded. In addition to that, our private insurance covered some of his speech. Well now that he is three, the state hands him off to the school system and we begin the IEP process.
IEP-Individual Educational Plan
Last week we had our 1st IEP meeting for Kaden. Four hours of 3 school officials who have never met Kaden, trying to find the most "appropriate" placement for Kaden.. So, the school journey begins. Kaden is only 3 and doesn't have a voice yet. The closest thing he has to a voice is us, and that is why we are going to advocate fight until the end to get him exactly what he needs. No one said this would be easy, but so worth it in the end!
The great news is that he starts attending a special day class tomorrow. He will go 4 days a week, 4 hours each day. In addition to that he will have his behavior therapist with him at school one day a week, work with him in our home two afternoons a week, and continue his speech therapy 3 times a week. He will get additional Occupational Therapy and Speech Therapy in the classroom.
This is a huge transition time for him...for us to. I am finding out that I struggle with transitions just as much (if not more) as Kaden does! But he is so incredibly excited to start school, and we know this is where he will thrive. He will use his ipad in the classroom to assist with communication and will also use a picture schedule on his ipad to help him throughout his day.
We look forward to sharing his progress in the upcoming weeks!
Thanks for reading and have a wonderful week!!!
Tuesday, January 24, 2012
Excitement, MB12, & Bumps in the road
Yes, all of this in the last week. We have been very busy...and I don't just mean because I started school this week! Yes, my 16 hours a week of school, along with Kaden's 14 hours a week of therapy is a little bit of an adjustment ~ but there is still time for all of the other "stuff."
It all goes together. If you would have asked me a couple days ago, I would have been in tears as we struggle to help Kaden through some new challenges. But today, I am estatic and more optimistic than ever.
We started giving Kaden mb12 injections this week. If you want to read about mb12, you can do so at http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/ but basically it is a form of vitamin b12 which is said to help many children on the spectrum in amazing ways. However, it is not easy to get a prescription for and even more difficult to get the prescription filled. I learned this after 6 weeks of fighting like hell with K's pediatrician. Several research documents later, and with lots of persistance with a smile, I convinced his pediatrician to prescribe him one cycle (which is 6 weeks worth). Well, little did I know this was only the beginning of my fight. You can't get these injections filled at just any pharmacy. You can't even get these filled at any regular "compund" pharmacy. They have to be made at a "speciality compound" pharmacy because mb12 is not produced commercially. Anyways, when all was said and done we ended up paying out of pocket for these injections. They are not cheap, but Kaden's Naturopath was confident we would see profound results. Indeed we have!
I have given Kaden 3 injections so far, he gets three a week. Today I was absolutely amazed as I jotted down every new word I heard come out of his mouth. I counted....a total of 14 different words he said today! No, they weren't all new words, but the fact that he actually said that many different words in one day is HUGE! Mind you, these aren't perfect words coming out of his mouth....but he is trying, and we can understand him. He is so much more present, connected, and acting like a "typical" kid! Again, we lift another layer of fog from Kaden's brain just as we did with the diet and supplements. I don't care how many medical professionals want to tell me that there isn't enough scientific research to back these alternative treatments...there is no research more powerful than what I see happening with my son. Do I think all alternative treatments work for every child? Absolutely not. But how will you ever know unless you try it? As long as Kaden is safe & healthy I will try anything and everything that has a chance at helping him.
Along with all of this development comes some more challenges for Kaden. He is going through his developmental milestones and currently in the phase of "mine, mine, mine." The problem is that he is almost three (a big three at that), and he is very strong. He has realized that he is strong, and he can use his strength to get what he needs. Cognitavely, he doesn't get that two children can share one toy. He does not have the ability to reason, and the concept of sharing is completely foreign to him. So we have been having some issues of him being agressive and it's never easy having the conversation that your kid may get kicked out of 2 hour child care because he is becoming too "dangerous." The good news is that he has one of the best behavioral therapists working with him, and she is helping him (and us) through this.
As always, the bumps in the road always seem a lot smoother when there is exciting progress. We are so proud of Kaden!
Have a great week :)
It all goes together. If you would have asked me a couple days ago, I would have been in tears as we struggle to help Kaden through some new challenges. But today, I am estatic and more optimistic than ever.
We started giving Kaden mb12 injections this week. If you want to read about mb12, you can do so at http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/ but basically it is a form of vitamin b12 which is said to help many children on the spectrum in amazing ways. However, it is not easy to get a prescription for and even more difficult to get the prescription filled. I learned this after 6 weeks of fighting like hell with K's pediatrician. Several research documents later, and with lots of persistance with a smile, I convinced his pediatrician to prescribe him one cycle (which is 6 weeks worth). Well, little did I know this was only the beginning of my fight. You can't get these injections filled at just any pharmacy. You can't even get these filled at any regular "compund" pharmacy. They have to be made at a "speciality compound" pharmacy because mb12 is not produced commercially. Anyways, when all was said and done we ended up paying out of pocket for these injections. They are not cheap, but Kaden's Naturopath was confident we would see profound results. Indeed we have!
I have given Kaden 3 injections so far, he gets three a week. Today I was absolutely amazed as I jotted down every new word I heard come out of his mouth. I counted....a total of 14 different words he said today! No, they weren't all new words, but the fact that he actually said that many different words in one day is HUGE! Mind you, these aren't perfect words coming out of his mouth....but he is trying, and we can understand him. He is so much more present, connected, and acting like a "typical" kid! Again, we lift another layer of fog from Kaden's brain just as we did with the diet and supplements. I don't care how many medical professionals want to tell me that there isn't enough scientific research to back these alternative treatments...there is no research more powerful than what I see happening with my son. Do I think all alternative treatments work for every child? Absolutely not. But how will you ever know unless you try it? As long as Kaden is safe & healthy I will try anything and everything that has a chance at helping him.
Along with all of this development comes some more challenges for Kaden. He is going through his developmental milestones and currently in the phase of "mine, mine, mine." The problem is that he is almost three (a big three at that), and he is very strong. He has realized that he is strong, and he can use his strength to get what he needs. Cognitavely, he doesn't get that two children can share one toy. He does not have the ability to reason, and the concept of sharing is completely foreign to him. So we have been having some issues of him being agressive and it's never easy having the conversation that your kid may get kicked out of 2 hour child care because he is becoming too "dangerous." The good news is that he has one of the best behavioral therapists working with him, and she is helping him (and us) through this.
As always, the bumps in the road always seem a lot smoother when there is exciting progress. We are so proud of Kaden!
Have a great week :)
Monday, January 2, 2012
Happy New Year!!!
"While we teach our children about life, our children teach us what life is about."
Wow, what a year it has been! As we have prepared and welcomed 2012, I have spent a lot of time reflecting on 2011 and all that it brought us.
I wouldn't say 2011 was the easiest year, but it was definitely fulfilling. I think I have learned more about myself, my children and my relationships in this one year than in my entire life. I have shed a lot of tears and felt fear that was at one time unthinkable, but I have also celebrated some successes that made me feel like I was on top of the world.
Ten months ago we were told by several different professionals that Kaden has some serious motor planning issues which would affect his development, but that it was too early to tell how severe or where he would be developmentally in the future. In the months following we he was diagnosed twice with Autism, along with Dysphagia and possibly Apraxia.
Here we are entering the new year and Kaden has surprised all of us. I always knew in my heart things were going to be ok, no matter what the outcome. But he has made strides that they said weren't possible. One year ago, we could not get him to make any noise at all to even approximate words. At 2 years old, he had not yet started to babble. I now enter a room to hear him calling "ma ma." I tell him to go get his shoes, and he says "shoes." One year ago he would not even have looked at me when I said his name. Today he is present, connected, and engaged. Not just 50% of the time like we had hoped, but ALL of the time. It truly is nothing short of amazing.
Kaden would not be where he is today if it was not for all of his hard work. I often listen to people complain about their full time job, and how exhausted they are. I just can't help but laugh. My son is 2.5 years old with a full time job that is probably more mentally demanding than any job any adult has (except maybe those who work with him, lol). When he isn't in his therapy sessions, we are constantly putting demands on him at home. But it is all paying off, and the greatest thing is that he is starting to feel the benefits of all of his hard work.
He uses an iPad to communicate, along with sign language and sounds. There are no words to describe the way his eyes light up when he makes a sentence with his iPad and I repeat it back to him. He says "YES!" with such excitement in his voice.
Kaden has the best of the best working with him and overseeing his care. This team consists of the following:
Thank you to all of Kaden's therapists, our family, and friends for the constant support as Kaden continues to make remarkable strides in his development.
Lastly and certainly not least, thank you to all of those who continue to read our blog and learn. The more YOU know, the better Kaden's life will ultimately be!
Happy New Year, make it a great one!
Wow, what a year it has been! As we have prepared and welcomed 2012, I have spent a lot of time reflecting on 2011 and all that it brought us.
I wouldn't say 2011 was the easiest year, but it was definitely fulfilling. I think I have learned more about myself, my children and my relationships in this one year than in my entire life. I have shed a lot of tears and felt fear that was at one time unthinkable, but I have also celebrated some successes that made me feel like I was on top of the world.
Ten months ago we were told by several different professionals that Kaden has some serious motor planning issues which would affect his development, but that it was too early to tell how severe or where he would be developmentally in the future. In the months following we he was diagnosed twice with Autism, along with Dysphagia and possibly Apraxia.
Here we are entering the new year and Kaden has surprised all of us. I always knew in my heart things were going to be ok, no matter what the outcome. But he has made strides that they said weren't possible. One year ago, we could not get him to make any noise at all to even approximate words. At 2 years old, he had not yet started to babble. I now enter a room to hear him calling "ma ma." I tell him to go get his shoes, and he says "shoes." One year ago he would not even have looked at me when I said his name. Today he is present, connected, and engaged. Not just 50% of the time like we had hoped, but ALL of the time. It truly is nothing short of amazing.
Kaden would not be where he is today if it was not for all of his hard work. I often listen to people complain about their full time job, and how exhausted they are. I just can't help but laugh. My son is 2.5 years old with a full time job that is probably more mentally demanding than any job any adult has (except maybe those who work with him, lol). When he isn't in his therapy sessions, we are constantly putting demands on him at home. But it is all paying off, and the greatest thing is that he is starting to feel the benefits of all of his hard work.
He uses an iPad to communicate, along with sign language and sounds. There are no words to describe the way his eyes light up when he makes a sentence with his iPad and I repeat it back to him. He says "YES!" with such excitement in his voice.
Kaden has the best of the best working with him and overseeing his care. This team consists of the following:
- Social Worker
- Pediatrician
- Developmental Pediatrician
- Neurologist
- Speech Therapist
- Occupational Therapist
- Behavioral Therapist
- Feeding/Swallowing Therapist
- Ear, Nose, Throat Specialist
- Nutritionist
- NaturoPath
- Sensory Group leaders
- The wonderful people at SCOE
Thank you to all of Kaden's therapists, our family, and friends for the constant support as Kaden continues to make remarkable strides in his development.
Lastly and certainly not least, thank you to all of those who continue to read our blog and learn. The more YOU know, the better Kaden's life will ultimately be!
Happy New Year, make it a great one!
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