People who know me well know that I do not text, tweet or use Facebook. So putting together this blog has been such a new experience and those that visit may see it changing as I learn more. I have avoided technology not because I am not capable, but by choice. I knew for me it would be a temptation to get sucked into things that were easier and more fun than figuring out how to best help George, how to spend more time with my older boys and husband, how to keep up with the house and keep us all fed etc...All that being said I do email and frequent yahoo groups and research late at night all I can. I have learned so much about how to best help George, thanks to technology. There is a balance. I am now motivated to use more technology to reach out and help George. I do have some health reasons as to avoiding certain technologies too, however that is another story! :) The bottom line here is if it helps George then it helps us all!
The responses I have received so far from people about my blog have been basically amazement about all I have detailed. To me it is not that amazing. I have had LOTS of time to think and I feel like God has been preparing me for the last 5 1/2 years. Looking back just makes me smile because I can see his hand in it all. He has put amazing people in my life to encourage me, pray for me and teach me things I needed to learn. I am so thankful for them all.
As you can imagine, George and I have spent lots of time together. We have never spent a night apart in almost 6 years. Even after heart surgery, I spent the night in a chair holding his hand in ICU every night till he could be unhooked from the many tubes and monitors and I could hold him. Neil and I tag teamed so I could use the bathroom.
I can't remember exactly when it began, but George didn't sleep well for the first 3 years, therefore I didn't either. I think I averaged 3 hours most nights. I am amazed at the strength God gave me to endure. During the night he would just cry (me too, most nights) in pain, stomach I believe. Bouncing him on an exercise ball was the only thing that seemed to sooth him and nursing. It was exhausting for me. I only woke Neil up if I absolutely had to, because he didn't need to be sleep deprived either, especially since he had to work all he could to pay the bills.
I was trying many things to figure out what was going on. Some nights it was illnesses. George had a bad respiratory cold before the hole in his heart could be repaired. It was scary. My mother in law and I stayed up all night with him, taking turns holding him upright so he could breathe
Thankfully, George's digestive system is doing very well today. He sleeps well all night, unless he has an illness which doesn't happen too often these days. Many people with Down syndrome have issues going to the bathroom and have to be on medication all the time. So even though they STINK, I love George's daily poops! It is the little things in life to be grateful for---poop!!!! Yeah!
As I began putting together this plan and I finally spoke with Julie Sando out in California on April 19th, I already knew what we needed to do. Julie didn't have to tell me too much about what she did, because through my research, I already KNEW I wanted to work with her. I freely told her our struggles and felt she could relate because she has seen so many families like ours. We are not unique in our struggles. She gave me suggestions on how to make my letter to my out of state family members and how to reach out for help. It was so funny when she emailed me after the call and said she felt like we knew each other already.
It took me about 5 days to get everything written out and I was awake most of those nights with my mind swirling with thoughts. As soon as I had the words down and I was still sleep deprived, I had to tell someone to keep me accountable. I knew as soon as I slept well that I would come to my senses and chicken out, because while I knew what needed to happen, it was also terrifying. Those negative thoughts that wanted to creep in like, "How can you ASK for money and peoples' time and energy?"
I chose to listen to what I believe was God's voice. I know in my heart that there are others that will be blessed by participating and it is not all about us. Knowing that George will not get better doing what we are doing now, is also great motivation. George needs PEOPLE, all different, one on one. So I started sharing the vision with those close to me. I am so thankful for the encouragement I received and it is their prayers and encouragement that keeps me going!
I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust. Psalms 91:2
Sunday, May 26, 2013
Saturday, May 4, 2013
Our Story
I have been the wife of a wonderful man for 19 years and a Christian for 17 years. We have been blessed with 3 beautiful boys, that I have the opportunity to home school. Our youngest son, George, was born with Down syndrome and we could not imagine life without him.
From the time we found out George had Down syndrome, I quickly went into research mode checking into all the health issues involved, therapies and strategies we could use to help him be his best. I have tried many things to help him including medical intervention, early intervention therapies, natural therapies, diet interventions and early learning approaches. Once I realized George was not being held back by Down syndrome issues so much as his autistic issues, then my focus had to change. The list of behaviors that the world calls autism became the number one focus for me. I know if I can help him with his autistic behaviors and sensory issues, then I can reach him and teach him.
My background is Elementary Education, but I am also a researcher and love to learn. I have been fascinated with natural health since 1996. I am always looking at ways to improve the quality of our lives and those around me. I had been interested in the rise in autism way before George was born, but didn't imagine it would ever personally affect me. I have my own theories as to why we have this epidemic and I believe there are numerous ways to treat it. It is about finding the way that works for your child. I have seen kids totally recover from it, not just manage it. So I know it is POSSIBLE.
My research led me to the Son-Rise program in Massachusetts, where they have a large Autism Treatment Center. They have been working with families for decades now with great success. Certain things about their program made them unreachable for our family at this time, such as having to fly out for a 5 day intensive training.
More research lead me to Julie Sando. She is the director of a company in California called Autistically Inclined. She is a Natural Play Therapy Family Coach. She actually volunteered in a child's Son-Rise program for several years. She wanted to be a graphic designer, but working with a special child changed her whole course of life. She trained at Son-Rise in Massachusetts for nearly 7 years. I was drawn to her approach for many reasons. One reason was because she works with the whole family. She helps all family members relate better with each other and with the special needs child. Her program "fits" our family. I experimented with some of the techniques with George and he responds beautifully. I want him to have this experience all day with a variety of people, so he can learn that people are unique and more fun than being in his own world. Really what is life without our relationships?
What is having a child with autistic behaviors like? All children are different, but here is an idea. Many parents see a quick or sometimes a gradual regression. This means at one point their child seemed perfectly typical, then all of a sudden they were gone, some even expressionless, losing any skills they may have had before like being potty trained or speaking. Imagine caring for your child 24/7 and not knowing if they really even know who you are and wondering if you will ever hear the words mama or dada. They don't respond to their name and they don't treat you much different than a stranger they may meet. It is as if you are just someone who feeds them and takes care of them. People wave and smile at them in public and they totally ignore them, not making eye contact at all or really even acknowledging them. They don't know how to "play" with toys or anyone. They can't speak so they may make frustrating noises all day and you don't know what they need. It is hard to teach them sign language or anything because they don't look at you or know how to mimic you.
I have tried to teach George for over 2+ years to touch his head, noes, etc....He will look at me as if to say, "I know where my head is but I can't make myself respond to touch it!." It is literally like he is trapped in his body. I remember thinking this early on and the first time I heard a boy tell about his experience when he "was" autistic he said the exact same thing that he was trapped in his own body. It is a heart breaking thing to witness.
When children don't get the help they need their behaviors may even become violent and they may get to a point where their parents can no longer care for them. The CDC admitted this year that the current rate for autism is now 1 in 50! This is a huge statistic and affecting so many families.
Many people may not be aware of this epidemic, because most times these parents are pretty isolated in that for them to go places with their child it is very stressful for everyone. People with autism receive much different sensory information than we do.
For George certain noises really upset him like laughing or crying. It is as if it is painful for him. He also gets over stimulated visually and will start shaking his head a lot when this happens. He throws objects to stimulate his peripheral vision as well. It is getting much harder to take him places the bigger he gets. He runs off with no concept of fear.
During the last 5 years many of my friends and family have wanted to help me/us. Being able to verbalize the help we really needed and then being able to accept it, was a huge obstacle for me. Now I realize that this whole project can be a blessing to so many others. Not only can it give George a chance to be the best he can be, but it will help educate others on the possibilities for their children with autism. Also, anyone who is able to volunteer locally will be enriched by the whole experience and come away with a valuable skill, learning how to connect with a person with autism, brain injury etc... and even being able to totally recover someone. This will be huge in the world we live in today!
From the time we found out George had Down syndrome, I quickly went into research mode checking into all the health issues involved, therapies and strategies we could use to help him be his best. I have tried many things to help him including medical intervention, early intervention therapies, natural therapies, diet interventions and early learning approaches. Once I realized George was not being held back by Down syndrome issues so much as his autistic issues, then my focus had to change. The list of behaviors that the world calls autism became the number one focus for me. I know if I can help him with his autistic behaviors and sensory issues, then I can reach him and teach him.
My background is Elementary Education, but I am also a researcher and love to learn. I have been fascinated with natural health since 1996. I am always looking at ways to improve the quality of our lives and those around me. I had been interested in the rise in autism way before George was born, but didn't imagine it would ever personally affect me. I have my own theories as to why we have this epidemic and I believe there are numerous ways to treat it. It is about finding the way that works for your child. I have seen kids totally recover from it, not just manage it. So I know it is POSSIBLE.
My research led me to the Son-Rise program in Massachusetts, where they have a large Autism Treatment Center. They have been working with families for decades now with great success. Certain things about their program made them unreachable for our family at this time, such as having to fly out for a 5 day intensive training.
More research lead me to Julie Sando. She is the director of a company in California called Autistically Inclined. She is a Natural Play Therapy Family Coach. She actually volunteered in a child's Son-Rise program for several years. She wanted to be a graphic designer, but working with a special child changed her whole course of life. She trained at Son-Rise in Massachusetts for nearly 7 years. I was drawn to her approach for many reasons. One reason was because she works with the whole family. She helps all family members relate better with each other and with the special needs child. Her program "fits" our family. I experimented with some of the techniques with George and he responds beautifully. I want him to have this experience all day with a variety of people, so he can learn that people are unique and more fun than being in his own world. Really what is life without our relationships?
What is having a child with autistic behaviors like? All children are different, but here is an idea. Many parents see a quick or sometimes a gradual regression. This means at one point their child seemed perfectly typical, then all of a sudden they were gone, some even expressionless, losing any skills they may have had before like being potty trained or speaking. Imagine caring for your child 24/7 and not knowing if they really even know who you are and wondering if you will ever hear the words mama or dada. They don't respond to their name and they don't treat you much different than a stranger they may meet. It is as if you are just someone who feeds them and takes care of them. People wave and smile at them in public and they totally ignore them, not making eye contact at all or really even acknowledging them. They don't know how to "play" with toys or anyone. They can't speak so they may make frustrating noises all day and you don't know what they need. It is hard to teach them sign language or anything because they don't look at you or know how to mimic you.
I have tried to teach George for over 2+ years to touch his head, noes, etc....He will look at me as if to say, "I know where my head is but I can't make myself respond to touch it!." It is literally like he is trapped in his body. I remember thinking this early on and the first time I heard a boy tell about his experience when he "was" autistic he said the exact same thing that he was trapped in his own body. It is a heart breaking thing to witness.
When children don't get the help they need their behaviors may even become violent and they may get to a point where their parents can no longer care for them. The CDC admitted this year that the current rate for autism is now 1 in 50! This is a huge statistic and affecting so many families.
Many people may not be aware of this epidemic, because most times these parents are pretty isolated in that for them to go places with their child it is very stressful for everyone. People with autism receive much different sensory information than we do.
For George certain noises really upset him like laughing or crying. It is as if it is painful for him. He also gets over stimulated visually and will start shaking his head a lot when this happens. He throws objects to stimulate his peripheral vision as well. It is getting much harder to take him places the bigger he gets. He runs off with no concept of fear.
During the last 5 years many of my friends and family have wanted to help me/us. Being able to verbalize the help we really needed and then being able to accept it, was a huge obstacle for me. Now I realize that this whole project can be a blessing to so many others. Not only can it give George a chance to be the best he can be, but it will help educate others on the possibilities for their children with autism. Also, anyone who is able to volunteer locally will be enriched by the whole experience and come away with a valuable skill, learning how to connect with a person with autism, brain injury etc... and even being able to totally recover someone. This will be huge in the world we live in today!
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