Guest guest Posted March 8, 2011 Report Share Posted March 8, 2011 Woo hoo!! TUESDAY, MARCH 8, 2011It's All or Nothing...That's How We Roll!!! Sam has often helped me to clarify my perception on life and who I am. I have figured out that we can be an all or nothing kinda family. Let me try to explain. So Sam has been working on rehabing after hip surgery. He did fine with the wheelchair but when the walker was introduced Sam decided to take a stand (oops bad pun) not literally stand but he made it clear he didn't want to use the walker. Now most people/children would work on standing and then taking a few steps each day, slowly getting used to the new way of walking. Most people...but not Sam. To see the rest of the post and video, go to: www.suemayer-specialneedsmom.blogspot.com Sue MayerMom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Perthes or as I like to say “Yada, Yada,Yada” www.suemayer-specialneedsmom.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 WONDERFUL news!!!!--- Em ter, 8/3/11, Sue Mayer escreveu: De: Sue Mayer Assunto: [DownSyndromeInfoExchange] Sam is Walking!!!!!!Para: "Sue Mayer" Data: Terça-feira, 8 de Março de 2011, 23:41 TUESDAY, MARCH 8, 2011 It's All or Nothing...That's How We Roll!!! Sam has often helped me to clarify my perception on life and who I am. I have figured out that we can be an all or nothing kinda family. Let me try to explain. So Sam has been working on rehabing after hip surgery. He did fine with the wheelchair but when the walker was introduced Sam decided to take a stand (oops bad pun) not literally stand but he made it clear he didn't want to use the walker. Now most people/children would work on standing and then taking a few steps each day, slowly getting used to the new way of walking. Most people...but not Sam. To see the rest of the post and video, go to: www.suemayer-specialneedsmom.blogspot.com Sue Mayer Mom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Perthes or as I like to say “Yada, Yada,Yada†www.suemayer-specialneedsmom.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 Eunice, I know exactly what you are saying. Okay, I’m going to babble a bit, hang in there and I’ll see if I can make sense of it. We need to raise expectations for our kids…plain and simple. I just don’t feel that the schools have it figured out and I don’t really put all the blame on them. How society, the medical community and the media present our children is not helping our cause. I have many public schools that follow my blog and I walk a fine line in talking about the public school system. I am a parent liaison for special needs families in our district and I find that position both challenging and enlightening. I love many of our teachers and because I have worked for so long with Sam one on one I know the challenges they are facing in working with Sam. I think about the school system like I do any relationship. We are going to agree at times and we each have to respect the fact that we will also agree to disagree. I have always been fascinated by the whole concept of relationships. For example a man and a woman meet and marry. Seems simple, but then you think about their upbringing, traditions, discipline. When you begin to think about how very different each person is and how they have entered into an agreement to live, love and co-exist together, the baggage, the different wants/needs….it’s a wonder that we stay married. Then we decide to bring children into the picture. Completely new and unique personalities with their own needs and wants. And then let’s add a child with special needs. Talk about rocking the boat. Now think about schools. They are regulated by politicians that have not stepped into schools or understand the daily challenges teachers face. Administration and school boards that sometimes are in the district office more than the classroom. A curriculum that has not changed with the changing needs of our society and our world. Parents that are involved and those that are not. Children that can fly through school without a care in the world and those that struggle at every turn. Really great teachers and not so good teachers. Really great peer examples and not so good peer examples. Now let’s bring them all together and have them work effectively together. Hmmm let’s look at what happy married couples for more that 15 years say about their marriage: " I am married to someone who cares about me, who is concerned about my well-being, who gives as much or more than he or she gets, who is open and trustworthy, and who is not mired down in a somber, bleak outlook on life. " Now what if we could get everyone who interacts with our children to feel the same way? What if we all approached those in our lives the same way? What if we all felt about our employers that way? What if we felt about our politicians or constituents the same way? This is not a simple problem with a simple answer. It’s a mindset that needs to be changed. It’s a global change. I know I can’t change anyone except myself. So I try to base my relationships and my life on keeping true to the statement above which has led me in many different directions as you can imagine. Changing teachers, changing schools, homeschooling…and the journey continues. The community I’m building around Sam has to be strong but most of all they have to care about him. Sue MayerMom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Perthes or as I like to say “Yada, Yada,Yada”www.suemayer-specialneedsmom.blogspot.com From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of ZulianiSent: Wednesday, March 09, 2011 8:43 AMTo: DownSyndromeInfoExchange Subject: R: [DownSyndromeInfoExchange] Sam is Walking!!!!!! Sue,Thanks so much for sharing your story and the videos. It must be very exciting to see Sam on his feet again. He is adorable and I love the way you interact; it’s obvious you have a very special relationship. I also wanted to comment on another aspect of your blog which maybe wasn’t the main theme, but… You said:“Does it matter if you understand the periodic table of the elements, does it matter if you understand the history of our country, does it matter if you know all of the presidents and when they served, does it matter if you can do algebra and geometry, does it matter if you can read notes of music???? It does if you think about the idea of experiences and the thought process that through experiences a child can develop their personality, likes, dislikes, interests and passion. What I don't like about how schools are currently set up is that they are covering a lot without allowing a child to really jump off and explore their interests, immerse themselves in them and really help them determine their passions and direction.” Very valid observation and I think a lot of kids take the stance that most of the stuff they study is not going to be useful in real life so why study it? (I remember thinking that myself at that age!!) Instead, what do you do when the teachers themselves trim back the entire curriculum to practically nothing arguing that it is too difficult for your child and he is never going to need it anyway? This is what is happening in our son Zacky’s class (11 years old in Grade 5 public school in the north of Italy) They just take it for granted that since he has Down syndrome there is no way he could learn certain things so they simply cut it out of his program. This just pains me because I know he can do so much more. I have tried to show the teachers that he can do a lot of things that they have not shown him; they smile and agree to give him more but nothing really changes. I really wish that they would just see how far he can get with the regular program … aim high and see how far he gets, instead of putting the bar at the bottom rung, so to speak, and then letting him get away with walking round the bar altogether! He is going into middle school next year which already means an enormous effort to meet expectations even for kids who are good students, and I am already panicking!! Anyway, I guess I’ll stop ranting now, but thanks for letting me vent J We started a mailing list in Yahoo in Italian about 3 years ago and I made the mistake of allowing non family members to subscribe. The one time I ventured a comment on the mechanism of the school system here in our town, our son’s support teacher who was on the list was extremely offended so now I don’t dare touch the subject on our list in Italy. It’s great to be able to talk freely here J Saluti dall’Italia!EuniceMamma to Zacky 11 y/o with DS, and 13 Da: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] Per conto di Sue MayerInviato: mercoledì 9 marzo 2011 03:41A: Sue MayerOggetto: [DownSyndromeInfoExchange] Sam is Walking!!!!!! TUESDAY, MARCH 8, 2011It's All or Nothing...That's How We Roll!!!Sam has often helped me to clarify my perception on life and who I am. I have figured out that we can be an all or nothing kinda family. Let me try to explain. So Sam has been working on rehabing after hip s urgery. He did fine with the wheelchair but when the walker was introduced Sam decided to take a stand (oops bad pun) not literally stand but he made it clear he didn't want to use the walker. Now most people/children would work on standing and then taking a few steps each day, slowly getting used to the new way of walking. Most people...but not Sam. To see the rest of the post and video, go to: www.suemayer-specialneedsmom.blogspot.com Sue MayerMom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now Perthes or as I like to say “Yada, Yada,Yada”www.suemayer-specialneedsmom.blogspot.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2011 Report Share Posted March 9, 2011 I enjoyed the video, he's a cute little guy! Marsha > > TUESDAY, MARCH 8, 2011 > > It's All or Nothing...That's How We Roll!!! > > Sam has often helped me to clarify my perception on life and who I am. I > have figured out that we can be an all or nothing kinda family. Let me try > to explain. > > > > So Sam has been working on rehabing after hip surgery. He did fine with the > wheelchair but when the walker was introduced Sam decided to take a stand > (oops bad pun) not literally stand but he made it clear he didn't want to > use the walker. Now most people/children would work on standing and then > taking a few steps each day, slowly getting used to the new way of walking. > > > > Most people...but not Sam. > > > > To see the rest of the post and video, go to: > > > > www.suemayer-specialneedsmom.blogspot.com > > > > Sue Mayer > > Mom to Sam (10) with Down syndrome, Brain Injury, Apraxia, Dysphagia, > Respiratory/Immune Issues, Bi-Lateral Conductive Hearing Loss and now > Perthes or as I like to say " Yada, Yada,Yada " > > <http://www.suemayer-specialneedsmom.blogspot.com/> > www.suemayer-specialneedsmom.blogspot.com > Quote Link to comment Share on other sites More sharing options...
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