A couple of weeks or so ago a friend of mine asked if I had heard of a group called I Run For Michael. I hadn’t but was pretty interested. That night we got online and checked out http://www.whoirun4.com/. Wow! This group has people all over the world that run because they can for those who cannot. I urge you to check out the website and read about this great non-profit organization that provides yet another arm of support for your special needs child. They also provide runners for adults so this is not just for kids. We signed Taylor up and she was matched within a few hours. Then you start to get to know your runner and develop a personal relationship with them. It is exciting and we have already formed a bond and gained great support for our daughter! The other day Taylor got a medal in the mail that her runner Denise had won. It was so cool!!! You can also check out the I Run 4 Michael Facebook page! Truly an amazing experience!
I get this question often. When someone asks Taylor a question or says hi to her, she doesn’t respond with her voice. I always feel the need to just jump in and respond for her. If she doesn’t know you she will often look away or put her head down. Then people ask, “Is she tired?” It may appear that way and often I just say yes, she is and move on with my day. I try not to let it bug me most days, but to be honest it often does. I know people are being nice and I truly appreciate people acknowledging her and talking to her like they would anyone else. It is just that it starts to tug at the heart strings. I think in my head, no she cannot talk. Then my mind takes over and starts thinking of all of the things she doesn’t get to say with her voice. I need to try to remember that I am her advocate, I am her voice, and that when people ask this I should use this opportunity to explain why she doesn’t answer. Spread awareness. That is my mission.
#LOVE #SUPPORT #ADVOCATE #TAYSVOICE
Above: Taylor jet-setting to her first Phelan-McDermid Syndrome Conference.
When my daughter Taylor was diagnosed with Phelan-McDermid Syndrome she was not quite 2 years old. In fact, at the time her syndrome didn’t even have a name. They told me she had a chromosome deletion called 22q13.3 deletion. They also handed me a packet of very general information about chromosome anomalies and gave me a website. After giving us ALL they had, they said do you have any questions. My husband and I smiled and said nope, we are good. We were dying inside, yet knew they had nothing more to offer us. It took a few weeks to digest, okay maybe a few months. I started researching and I went straight to the website the doctor gave me. It turned out that Taylor was one in about 450 kids in the WORLD with this type of chromosome abnormality. It is generally a random mutation in most children who have this, also true in Taylor’s case. My husband and myself were not carriers of this mutation. We were virtually alone. No doctors in our area had a clue what this was. Everything on the internet was not specific (not to mention scary) to Taylor so it was hard to gather facts that way. We were devastated. We had no idea what to expect or what was coming next. Words like non-verbal, seizures, heart problems, kidney problems, gross-motor delay, and yes-even mental retardation we flashing in our brains constantly. Alone. Scared. Helpless. Grief. Then, one night I was surfing around the website that the doctors had given us, www.pmsf.org. I found that there was support groups spread across the United States. I found that this very small group of people had found each other and come together to help one another. I joined a yahoo group that exchanged messages and posts about medical findings, questions, frustrations, and even triumphs. It saved me. Literally saved me. We found out that there was a bi-annual conference held in South Carolina where all of these people came together and met each other. We had to go. Soon people in our community were coming out of the woodwork to make sure we could attend this conference. The feeling of being alone was starting to fade, a bit. We began to receive support from everywhere. People we didn’t even know got involved. Our grief started fade, a bit. Finally, the day had come and we headed to South Carolina! It was the best week of our lives. We learned so much and met so many awesome people. We felt like we belonged somewhere. We felt like we fit in. We felt understood. People got us. AMEN. Now I am part of an amazing group on Facebook that is my saving grace. Without my Facebook group I do not know where I would be. I learn so much from the parents on that group. I have become great friends with people on that group, people I have never met. We help each other learn knew things about our kids. When I am confused, scared, need answers, or even to share our small victories- I turn to the group. Now the grief only hits once I awhile when you least expect it. Even though Taylor is still part of a very small group, now 1 in 1300, I know we are not alone.
Support can do so many things for you and your family. I don’t know where we would be without the support that our family has received from family, friends, the community, strangers, and my coveted Facebook group. Support has changed our family’s lives forever.
All of my experiences with support are why I joined Special Kids Special Love. I am there to give and receive support in any way that I can. There is so much power that comes from support. Without the support of so many I am frightened to think where we would be today.
Whatever is going on in your life, I strongly encourage you to find support! There is power and knowledge in numbers so surround yourself with like-minded people and gather everything you can from them. Talk with them, learn from them, cry with them, laugh with them, move mountains with them.
People have asked me what it is like when you find out your child has special needs. When I tell people there is a grieving process they look at me funny. How can you grieve a beautiful child? There is no better way to describe what a parent goes through than in the words of Emily Perl Kingsley in the poem Welcome to Holland. I found the poem in the drawer of our hospital room when we were at one of our many visit when Taylor was young. I pull it out and read it often. Enjoy,
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
Summer is here and so many families are heading on vacation, going to the pool or lake, spending times outside, and just having a great time. For parents with a special needs child however summer is a completely different ballgame!
I am a teacher so I really look forward to spending the summers with my kids, you know catching up on all those things we don’t get to do during the school year. With school out, the schedules that our special kids value within an inch of their being are gone. The familiar faces they know and love at school are gone. For those on the spectrum the social skills they have been working so hard on through the school year are slipping away. We parents struggle to keep them entertained in a productive matter so we can maintain our sanity. For those that work all year round, finding appropriate care for them while we are working is next to impossible. Our typical kids summer fun also suffers because we are often tied up with just getting through the day.
Vacations are tough in our house too. Many of our kids on the spectrum cannot be in hot environments for long periods of time. As I write this blog, my family is currently visiting my mom in South Dakota. My mom is out with my nieces and nephews and my oldest child at the swimming pool. I chose to stay back with Taylor to keep her safe. (See previous blog titled “My Inspiration”) If she is exposed to high temperatures for even a short time, her lymphedema* will flair up and the extreme temps could also trigger seizures. Taylor overheats because she does not sweat like typical kids. She gets very red and overheats quickly. I am crossing my fingers that the extreme temps settle down for the remainder of our trip so we can venture out to enjoy this beautiful state.
So for all of you parents out there counting the days until we get some routine and normalcy back in our lives, I GET IT! You are not alone. I try to enjoy as much inside as I do outside. We often do things at night so Tay can tolerate the temps. I also read as much as I can and communicate with her therapists on things we can do to keep working on those skills that took years to learn. Time eventually passes and we are back in school. For parents, it will be a nice reprieve from the chaos of summer. In my many Google attempts to stay sane, I came across http://www.playproject.org/summer-activity-ideas-for-children-with-special-needs/. Check it out. This link provides some great ideas and resources for things to do, vacations, summer camps, and general tips for surviving your summer. Or join a local support group like http://www.specialkidsspeciallove.org/. Just being around parents and children going through the same thing can be your saving grace.
Have a great rest of your summer!
*-(Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg. –according to http://www.mayoclinic.org)
Today I want to introduce you to Taylor! She is 8 years old and has Phelan McDermid Syndrome. (PMS) PMS is a genetic form of autism and is very rare. When Taylor was diagnosed at 18 months she was approx. 1 in 500 or so. You can visit http://www.pmsf.org for more information. She is still only 1 in approx. 7000 in the world even now. We started genetic counseling when we were hitting a dead end trying to diagnose her. Through pretty extensive genetic testing they were able to finally diagnose her with something. Scientifically it is a very small deletion of the tip of her 22 nd chromosome. Taylor has never spoken a word in her life…although I believe with the extensive therapies and hard working teachers and staff at school, we are finally hearing Mama, Dada, and poop! Yes poop! We will take it! She has extreme muscle delay/hypotonia. She does not walk without the assistance of a wheelchair, walker, or adult. She has really made progress in this department this past year. She has a pretty weak immune system and frequently gets sinus and ear infections infections. She was under cardiac care until she was 5 to watch her muscle development in her heart. She overheats very easily because she simply doesn’t sweat like the rest of us. This can be scary because it can cause seizures. Tay has been through a couple of dental surgeries and has had tubes in her ears numerous times. She has a lot of stemming behaviors and you can often find her chewing on her fingers and hand! I list all of these issues that she has and I still consider myself, my family, and Taylor lucky. So many kids with PMS have many other problems that Taylor does not. Taylor is the happiest kid I know despite all of her struggles. She loves her siblings, her peers, and all people in her life. She lights up when animals come around. She loves music and repetative noises. Although she cannot speak, she could hold quite the conversation with anyone who will listen! Her sparkly little eyes will tell her story! She brings joy to everyone that comes in contact with her. She is my INSPIRATION. She has taught myself and so many in our family what perserverance, love, and hard work really are! Who inspires you? Share your story on our blog today.
Until next time,