These ladies are doing such amazing things for children and families in the SPD Community. We featured them in our August newsletter and wanted them to join us here on “The Gift” blog too in celebration of “Making A Difference”. I’m going to let them introduce themselves and talk about their work because they do it so well. I’d like to introduce you all to Kelly and Dawn.
CHYNNA: Welcome to “The Gift” blog, ladies! I’m thrilled to have you here. Would you guys like to give our readers a little of your background?
KELLY & DAWN: Absolutely, our names are Kelly and Dawn, we are both Stay at Home mothers living in the northern suburbs of Chicago, IL. We both have three children, Kelly with a girl and two boys, and Dawn with two boys and a girl (due in September). Before any of our children were diagnosed, neither of us had heard of Sensory Processing Disorder, or the acronym SPD. Today it is an integral part of every moment of every day, because all the boys between the two of us have a diagnosis of SPD, ranging from mild to severe.
We are each other’s confidant, source of information, support system, and business partner. We truly feel we had been connected for a purpose.
Both of our entire stories are posted on our website with MUCH more detail about our journeys with our children, and SPD. They can be found at this link: http://www.spdparentzone.org/about-us.php
CHYNNA: First of all, congratulations, Dawn! That will be a real change for you having a girl with two boys, I’m guessing. LOL! Now, I’ve read your stories and was touched to tears—I related to your individual stories so much. As you mentioned, you both have children with SPD. Was there a specific experience or incident that sparked the inspiration for creating your Organization? How did you meet?
KELLY & DAWN: Our husbands are friends from work. Our first children were born a month apart from each other. Because of that, we all suggested to get our families together for a play date. Our children were about 4 and 5 months old (they are now 5 years old). We hit it off right away. As you get older it can be hard to make new true friends, but we felt from the beginning that we could be ourselves and not feel judged.
It wasn’t until both our second children were born that we really began needing each other’s support. That was when both of our journeys into SPD began. It’s been hard for our family and friends to understand our children, and our parenting towards them. It was such a comfort to know that someone understands what you are going through. Some days we call the other crying and all they say is “I know” and it magically makes you feel so much better.
We began to wonder how many other people in our area were going through the same situation without any support. That inspired us to start our SPD Parent Support Group. We just wanted to reach out to other parents and shout, “You are not alone! You are not crazy! We understand!”
After starting our SPD Parent Support Group, and hearing the same stories about people spending hours and hours researching, and they just couldn’t get enough information, we started our non-profit organization, SPD Parent Zone, in hopes of reaching families on a larger scale.
Through our parent support group and lots of research, we also found out that a lot of families had/have a hard time affording therapy services or are not able to afford them at all. We know how valuable these therapies are through the remarkable changes we have seen with our children. We felt we had to do something to help those families that couldn’t afford it. A large part of our charity is to raise money for those families.
CHYNNA: That is such an inspirational story. It’s wonderful to have support when you’re a ‘sensational’ caregiver but having support from those who truly ‘get it’, is such a comfort. Bravo to you both for realizing this need and fulfilling it so beautifully, especially what you for raising funds for therapy. Let’s talk more about your very informative Website. Tell us all about it and what visitors can find on there.
KELLY & DAWN: Once a solid diagnosis of SPD had been established in our kids, the question then became, “OK…now what?” No one seemed to know what it was, or even heard of it. We had no idea where to get help, what to do next, or how to treat SPD. On a mission to help our children, we both spent many sleepless nights searching for the answers in books, websites, articles, videos, etc. Our website is compiled of all the information we spent so many hours searching out. It is all in one place, from where to begin and symptoms checklists for those who may be wondering, to where and how to get treatment in all 50 states. Also included are videos to watch, books to read, additional websites, and more.
CHYNNA: Excellent! Having the best resources, books, etc. in one location is such a blessing. I remember researching for endless hours, as you both did, looking everywhere in cyberspace for information. Having it all in one place really reduces the stress of trying to get on the right track. Great job. What is your mission for your organization? How can we help you with that mission?
KELLY & DAWN: Our mission is to raise awareness about Sensory Processing Disorder, to fund the Sensory Processing Disorder Foundation to support continued research into this condition, and help provide families assistance that cannot afford therapy services.
To help, you can spread the word about our website and non-profit. As with any non-profit organization, the only way they are made possible is through the generosity of others. If you are able to donate anything at all, it is greatly appreciated, no amount is too little. You can do so through our website: www.spdparentzone.org/donations.php
CHYNNA: Wonderful, thank you. As moms, who’ve both gone through so much, what advice can you give to other families just beginning or trudging along their own journeys?
KELLY & DAWN: Many people won’t understand. In our experience, we’ve heard stories of those closest to you tell you that you’re crazy, disagree with you, or blatantly not even try to understand. That should never deter you. You know your child the best. Remember: you’re the voice for your child. If you don’t fight for them, no one will. Always trust your parental instincts, no matter what, and research, research, research. Don’t give up! Their success and progress depends on your dedication to them.
CHYNNA: Excellent advice, guys. Since you are both models of advocating for SPD children, can you tell us the most important things we should be doing to advocate for our own kids?
KELLY & DAWN: There are several important things you can be doing to advocate for your kids, educating yourself, along with as many people as you can, that this is a documented Disorder, and it is not your child’s fault.
Also, don’t be afraid to disagree with anyone….doctors, therapists, schools, etc. They may be professionals, but you are the professional when it comes to your child. If something doesn’t seem right, or you are not getting the answers you need, it is up to you to dig in and push back.
CHYNNA: Thank you so much for saying that. There are many professionals out there who either don’t understand SPD or don’t want to and will try steering you in another direction (it happened to us!) Parents need to trust themselves and follow the path that feels right. Keep asking questions! Do you have any upcoming events that you’d like people to be aware of?
KELLY & DAWN: Yes, we are having our first annual fundraiser in honor of the Sensory Processing Disorder Foundations 30th Anniversary. We hope to raise awareness about SPD in our community, raise funds for the Sensory Processing Disorder Foundation, and funds for families in need of therapy services.
It is often hard to take our children with SPD to public places due to overstimulation. We wanted to create an environment that was Sensory Friendly and family oriented. We are going to have several sensory stimulating activities, along with a separate quiet room for children that are too over stimulated. We have teamed up with our children’s therapy group. They are going to be helping at all the booths, available to answer questions and help educate about SPD. For more information: www.spdparentzone.org/events.php
CHYNNA: That sounds fantastic. I encourage our readers who are in and around your area to go and check it out. I’d love to know if you have any final pearls of wisdom or tips for our readers.
KELLY & DAWN: One of the hardest and most important things to do is to take care of yourself. As a parent with a special needs child(ren) we feel guilty taking time for ourselves. It is a rigorous and challenging task being the parent of a child with SPD, and it can suck your energy dry. Taking time for ourselves allows us to feel refreshed, recharged, and able to handle the rollercoaster of emotions and be present for our family. It is not a selfish act—it is a necessity.
Remember: When things get tough, take a deep breath and put yourself in their shoes.
Wow! That is outstanding advice and something even I forget about: ME! We thank Kelly and Dawn for taking some time out of their hectic schedules to join us here on “The Gift”. What amazes me the most about these ladies isn’t just what they’re doing but how they got this all together: out of love and understanding of their own children. You both deserve an award for what you’re doing. Please check out their website and add it to your Favorites. It’s definitely a resource every ‘sensational’ family should have connection with.
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