We Learned It By Living It
It is about time that all of the families that share an SMA child get together and assemble a reference book for our children. We have all done it the same way from the beginning: We see something is wrong with our child, we can't say what it is, but we frantically go to the doctor hoping for some answers and we are quickly reassured that it is okay and that some children are off to a slow start. "It is not anything to worry about." We go home and see that the weakness is not a developmental delay, but it is actually getting worse?? I took Crystal into First Steps Intervention and through the PT I was able to convince the doctor to take things seriously. Then came the extensive testing that ended up being totally unnecessary! And then many of us get told that there is nothing we can do, just enjoy our child while we can and make them as comfortable as possible.
Many of us initially believed that. I did. I used to have all the respect in the world for doctors. They would do everything needed to take care of my daughter like she needed. I did not question what he had told me. Who am I to question that? I spent almost 6 months following the professionals with my daughter's care and it was mere common sense that led me to rebel against them. They argued with me about what I knew about my own daughter. I didn't much care at that point how much schooling they had and how much they knew or didn't know about SMA, they just didn't know my daughter. I was able to get online and do the necessary research to find all the wonderful families of SMA that I have met. I have been taught and guided by many of families and Crystal is what she is today because of that.
But I will never ever forget the pain and suffering Crystal went through during the period it took me to see the light in what I needed to do for her care: being her sole advocate. I will never ever forget the state of frenzy my mind was in for 6 months worried sick about my child thinking I was going crazy when I was seeing that there could be things done to help her but the therapists wouldn't listen to me.
Hearing the words from the other families had a very powerful effect on not only me and my actions, feelings, and functions, but also the therapists and doctors I dealt with for Crystal. While I couldn't get them to listen to me, I could always get them to listen to the 5 other families that shared their experience with their child that showed a consistent benefit out of whatever the treatment protocol was. It has been what has helped Crystal more than anything else.
The Book I am
wanting to put together is going to be to benefit all of the families, especially newly
diagnosed families. The families swap information back and forth so much through E-mails and the message
boards. I will be collecting data from these resources and posting them here on this site for possible
use for the book. A lot of the text may seem jumbled because if it was saved from
an E-mail or the message boards, you will be reading part of the conversation, or an answer to an inquiry by
another family. Please use the information wisely and continue your search until is clear to you that
the information will benefit your child and that you can use it correctly. I remember how hard it
was for me for the longest time because I didn't have a computer or anyway to get online and do as much
research as I needed to. I read library books and I had the doctors tell me info that is so out of date for
SMA that Crystal was heading in the wrong direction with her life. Luckily, I got online and found the best
groups and families and was able to change of way of life and now she is doing really good. I think.
Anyhow: My thought is having this book published so that it may be available to doctors, therapist or whoever we can get to buy it and pass it along to other families. I want the book to be available to all the families of SMA at cost meaning probably just shipping because I can just make copies of it on 8 x 10 paper and we can keep it in a binder to make the cost low. I have a company that is willing to make 17,000 copies for my group a year so I can make quite a few and spread them out.
If the book was actually to ever get published then all the funds raised by selling it to the community would go directly to FSMA. I DO NOT WANT TO PROFIT from this book. I do not want any recognition for my efforts but I do want anybody contributing information or their thoughts to the book to be given the credit they deserve mainly because I would like for them to be used as a contact if the family reading the info may have any further questions. Of course this would be optional.
I am going to post the book right here on Crystal's website so all of you can check on it as you wish. You can review what you have contributed, you can review what is being shared by all of the other families and then when the book is all done, I am wanting all of those who helped with the info to agree to the way it is set up and the info that is enclosed before I carry it to the next stage.
Introduction to SMA
Starter Tips by other families 1/21/03
Tips on Advocacy
Common Q & A
ABI Vest 1/21/03
Adapting Your Home
Allergies & Colds 1/21/03
Amino Acid Diet 06/21/04
Home Health Care 1/21/03
Hospital Issues 1/21/03
Insurance Issues 1/20/03
Meet The Kids1/21/03
Poor lung development
Range of Motion (Stretching) 1/21/03
Taking Time For You
Therapy toys & equipment
Wise Words of Wisdom
I also wandered if it may be necessary to create a book for each individual type for each of these issues. I also know that Crystal's is only 3 and there are probably many more issues that she has come upon yet or that maybe I forgot to add them.
I will add the info as I collect it, but I will not publish any info without the permission form being signed and mailed to me.
Please don't fret if you see info with your name on it, I am only going to post it on the website as I gather it from the message boards and E-mails and such. If you want it removed or if you feel as though I have worded it incorrectly, please contact me immediately and I will change it or remove it. Again, none of this will be posted permanently in the book without your permission and I will E-mail each of you directly the best I can to let you know I have used information that you have posted or shared with me or the other families.