Not literally, so calm down. Hi Everyone! Sorry it’s been so long since my last update. So much is going on in our busy lives right now. My daughter has embraced and excelled in a new school at the same time navigating life as a teenager. My older son joined band and just hit double digits. My husband has been working on started up his own business and I’ve been on this awesome ride called “recovery” with my Bennygoose! Let’s see, so I get this wild idea that instead of signing Benny up for different playgroups and circle times activities in our town, I would just start my own playgroup here at home and invite our friends. You see, our Benny wasn’t really into games or toys so I couldn’t see success happening in our Sonrise program if he had no interest in PLAYING in the playroom. So, I brought in the very BEST teachers of PLAY: TODDLERS! My plan worked out perfectly. With every play date, not only did Benny learn new things, so did I. To say that any one group of kids are “special needs” is ridiculous. Each and every child has they’re very unique set of needs and we need to take time to notice. I was a very young and stressed parent of my older kids and wish I had even a little bit of the perspective I have been gifted with now. What wonderfully unique and curious little beings toddlers are. (They might ALL be autistic, as well….lol) Not only was the Goose opening up to playtime but he started making greater strides with his therapists. We have gone from “not yet verbal” to using words like “up, down, go, two, three, eat, daddy, and momma”!!!! One time he even brought me his shoes because he wanted to go “bye-bye”! Each day he gives us a little more and we are so grateful for his hard work. There was a pretty yucky few weeks of illness that has prompted me to discontinue regular playgroups and focus on more one-on-one playroom time which will beautifully lead into a full Sonrise program. Sure, we could have and maybe should have started that several months ago but it didn’t seem like the right time. What WE want doesn’t always happen WHEN we want it. Sometimes we have to listen to our instincts and what our children are telling us. I definitely understand now that truly being in control means letting go of our controlling ways. As the holidays approach, my excitement builds. Benny loves the tree and Santa has a few surprises in store for this little guy. He may not enjoy Christmas in the same way that other kids his age do but I know he loves it just the same, if not more. Stay safe through the Holidays and remember that the one gift we cannot buy is time so spend yours doing things that make YOU feel good about yourself! Merry Christmas from us to you!
Sometimes I just feel so overwhelmed that I get the outstanding privilege to travel this journey into Benny’s world. What a fascinating and remarkable experience. There have been a couple rough days here and there, one being a day last month when Benny was finally officially evaluated and diagnosed with autism at the Kennedy Krieger institute. Folks, let me tell you how grateful I am for my experience at the Autism Treatment Center of America and for the whole Son-rise experience and that I had that perspective BEFORE this Kennedy Krieger experience. You would have thought they were telling me my son had weeks to live. Their faces wore such pity and sadness as my little Goose played happily (every few minutes coming to me for a kiss or a smile). How scary their “prognosis” would have been if I didn’t understand what autism REALLY was. I had to stop them before they could go on about planning for “long term care” for Benny’s future. Look people, if we are going to make up things we don’t know about the future, I would prefer to make up and dream about unlimited possibilities. Either way, it’s the future, therefore its all made up at this point. I was so excited that at this appointment, instead of hiding behind me and crying, my boy was PLAYING! He even planted some kisses on a couple of the therapists! My little guy was showing them all he could do and more. I could have jumped on the table and danced the jig but held off as not to take the attention off the real star of the show. Our goose has sure come a long way! We have started back this fall having his teacher from infants and toddlers come work with him. He would also cry and hide from her and now they’re like old friends. Benny just underwent extensive dental work for the first time under anesthesia and was a real champ at that. We now have 2 words, “up” and “mama” and started opening doors all on his own. I have also started a playgroup to surround Benny with friends and he plays more and picks up new things with each session. I could say that we have a ways to go, but don’t we all? We are all a work in progress. For now, I will continue to inch my way into Benny’s world and just enjoy this amazing and beautiful journey!
Well, one day……maybe. I’ve been so busy rearranging my house (and my life) since I attended the Son-Rise Start-Up in Sheffield, MA last week. There were 71 individuals in attendance from 17 different countries and 17 different states all coming together to help 67 precious people on the Autism spectrum. From the first moment, I knew the experience was going to be unforgettable. We all laughed and cried and shared intimate memories and hopes and dreams. We were mothers, fathers, grandparents, aunts, and professionals. Together, we came up with ideas to help each other in areas that we have made ground with our own children. The children we represented ranged in age from 2-33!!!! Never underestimate the tenacity and determination of a parents love! We saw evidence of children reaching major milestones that they were never expected to reach and saw and heard of many children recovering completely! It is now time for us to start the Benny Goose Son-Rise program and I am just so overwhelmed and excited about what this experience has on store for all involved. I will follow up with details on how to be a part of our program but for now I will just encourage everyone who knows anyone who is caring with someone with ASD, ADD, ADHD, Aspergers, PDD-NOS, on any other acronym (lol) CHECK OUT THIS PROGRAM!!!!!!! For all those who supported us in getting to The Autism Treatment Center of America, you have helped to completely change our lives and I will forever be greatful! Stay tuned as we help
Benny Goose fly!
There is nothing I would not do for my little Benny Boy. I’m so excited to be leaving today to start his Son-rise program that I don’t even mind that he kept me up most of the night watching Mickey Mouse and flapping those arms away. I have to chuckle at the thought because he is just getting ready to fly. He knows that help is on the way. I am so grateful for all the support and encouragement everyone has shown. I can’t wait to meet up with other parents from around the world and just support each other. Most of them will be an ocean away from their kids (a welcome break for some, I’m sure). My husband is so wonderfully supportive that he’s posting up at a nearby hotel with the Gooseman and Sean because I just can’t be away from them right now. Stay tuned for updates along the way. Here we go!
Well, after months of waiting, we took Benny to his appointment to be evaluated by the “experts” at an area institution. As soon as we saw the immaculate facility, we immediately felt confident that we were going to leave THIS place with some serious answers and great information. That confidence was so short lived as we found ourselves in a standard type doctors office for our entire visit. This “expert” asked us two hours worth of questions and tried to get Benny to play with toys and perform tasks. If he would do that for a stranger, I can assure you that we wouldn’t have been there in the first place. As I sat in that stuffy room, I felt like the grey walls were caving in on me. This room was even full of your standard medical equipment. Really? It is no big shock that Benny would be willing to show his best self in this room with this doctor? We left with a diagnosis of developmental delay and “likely” autism. That’s literally what it says. We were also asked to come back in 3 months to try again. Am I missing something here? Don’t they work with autistic kids? She actually told us to think of Benny as a typical 10 month old! He WAS quite typical when he was 10 months old. All I can say is I’m glad the parking was free and their coffee was pretty good. Time to get over the shock and disappointment and press on. Unbelievable.
I used to wonder where the “puzzle” analogy fit in with autism awareness….I think I get it now. It is one big and confusing puzzle for sure. There are so many different possible causes and contributing factors to this “autistic” behavior that finding out how to piece this puzzle together has completely consumed me. I’m beginning to feel as though I may be forcing some pieces so I need to take a “breather”. Many people think that parents are looking for a place to place the “blame”. (ie. vaccines, etc.) That’s not the case most of the time. We are looking for the things that can be helped so that our children can learn and socialize. If it was a vaccine injury, for example, you would not want to get that shot again. I recently took Benny to an optometrist. She is pretty sure he isn’t seeing properly and wants an MRI. I had to dig for that piece of the puzzle. It wasn’t offered up by the trusty pediatrician. If he is not seeing properly, what good is therapy? We are on the gluten-free, dairy-free diet. We aren’t trying to jump on the band wagon here but if my son is not tolerating what he eats, what good is therapy? Who wants to learn when their body is physically at war with itself? These are just a couple examples to demonstrate how important it is for the entire medical community to work together with parents to really start putting these puzzles together one piece at a time. I hate that many people who donate money to autism research don’t realize that much of that money is spent on trying to find this “autism gene” or a “one size fits all” medication to treat autism. Every puzzle is unique and those funds need to go towards the care of these individuals. That’s where I will leave you for now. I have a puzzle to put together.
There have been so many questions about what to do with this “autism” label that’s stuck on the backs of so many people, including our little Benny. There are diets, therapies, treatments, medications, supplements, etc. etc. Its enough to make your head spin. He is only 2 now. My mind tends to wander to when hes older and we have to deal with school…..YIKES! I become so overwhelmed that I have to just block that out for now. Everything I was reading about focused on how to change my son, to make him better, or “normal”. Then, I made my weekly visit to the library to stock up on more books about autism and came across one by Raun Kauffman titled Autism Breakthrough. As I started to read it, I found out that Raun, the AUTHOR, was autistic as a child. Did you catch that? He WAS autistic and he wrote this book! In reading a little further, I could just feel myself relax for the first time in weeks. I knew it was all going to be okay. I contacted a councilor at the ATCA (Autism Treatment Center of America) which is a non-profit organization that Raun’s parents founded and which he is now the CEO. I was immediately floored by the person on the other end of the line (and that there was a person at the other end of the line). She began to describe “The Son-Rise Program” that they offer and I knew right away that THIS was just what I needed us to be a part of. Its a program that is all about loving and accepting our children right where they are. Below is a letter from that counselor that sums it all up better than I could.
“The Son-Rise Program is a parent-directed home based child-centered program. We believe you know Benjamin better than anyone else. The Start-Up Program is our foundational training program for parents and professionals where we teach you everything you need to know to start your Son-Rise Program for Benjamin. This is an interactive and intensive training where we train you and empower you to run your program; it is not lecture based, we use experiential interactive exercises, you will see videos of our teachers working one-on-one with children of different ages, different diagnoses and different levels of challenges. We use parents’ questions about their children as a way to explain the techniques in individual situations.
The core belief of the Son-Rise Program: we believe that socialization is the biggest challenge of any child with autism, or any related developmental disabilities or delays. We focus on the challenges a child has, not the diagnosis. Some parents have a diagnosis for their child, others do not, some have a diagnosis they don’t agree with. Socialization is the ability to interact and to connect deeply and consistently in the way typical children do. To whatever extent Benjamin is interacting now, we want to help him do that more. The more Benjamin interacts, the more he’s overcoming his biggest challenge (as we see it), the more he will learn, of all the things you’re wanting him to learn. We see interaction as the doorway into a child’s world. We teach you how to build bridges to Benjamin, and to create trust.
One of the things we teach you at the Start-Up is how to recognize and utilize Benjamin’s own interests, his own motivations and his own particular learning style. And then how to build on that interaction through the use of play to teach him the things you want him to learn.
There is a big attitudinal part to the Son-Rise Program, which is as important as the technical part, the techniques we teach you. We teach you how to work with Benjamin with an attitude of loving nonjudgment. I liken it to an attitude of “even if my child never changes, I love him/her just the way he/she is.” Of course, most parents are wanting their child to change and grow, but starting with this attitude, even though to some it may seem contradictory initially, we see children make amazing changes.
At the Start-Up Program, we spend lots of time on communication and language skills. We see communication as a lot more than language. Effective communication is the ability to initiate conversation, to comprehend what you’re saying as well as what others are saying to you, communicating effectively with peers, being able to talk about thoughts and feelings as well as talk about a variety of subjects with anyone. We teach you how to help Benjamin be motivated to want to use his words, his language, as well as have the ability to do that. Our focus is on helping create self-sustaining individuals who are motivated to want to speak in complete sentenses and do all of the things I mentioned above, as well as be able to do all the things we all do that enable us to be totally independent. We spend lots of time on social skills and interaction also at the Start-Up as well as behaviors.
I hope this information is both helpful to you and useful in explaining The Son-Rise Program® to others.”
If you would like to join Benjamin’s “Son-Rise Program”, you can do so in many ways. There is a donate button on the homepage at http://www.BennyGoose.com I would like to send a special thank you gift to all who donate so please go to the “More Info” tab and message me your address. You can even click on the SHOP tab to see the “than you gifts” and pick the one you like. I look forward to sharing all I learn with any friend and family that want to join in our program. Most of all I ask for your prayers. I know God will make a way for us as He always does. Thank you everyone for helping us help our Benny Goose