This video is so inspiring and educational for all of us. It came into my life at such an important time for me and lifted my spirits at a time I needed it. Robert Pio Hajjar is such a beautiful, loving person. A leader who asks all of us about what is our vision, our purpose. Do something positive, like him! He looks at the positive, not negative. He is the founder of IDEAL-WAY, which believes every person should be included, deserving, equal, appreciated and loved. So true. So important. He builds us up instead of tearing us down and he taps into the philosophy of positive psychology, building on the strengths. I can't express how much hearing his message meant to me. He is the voice of my daughter. I cried tears of joy. Please watch. You won't regret it.
Giving advice when one just wants a hug. Demonstrating your need to show you have some special knowledge on the subject. Letting politics get in the way. Challenging or confronting someone when the person is not psychologically ready. Focusing on yourself. Not being there. Holding people up to the standard of perfection. Talking more than you listen. Thinking you know how someone feels. Making assumptions or judgments.
What is it?
Listen with no judgement. Give advice only when asked for the advice. Understand that two people can go through the same general problem, but that each experience can be quite unique. Leave your personal or political agenda at the door. Recognize that there is an appropriate time and place for caring confrontation. Sometimes the person isn’t ready for it. Other times they may need some nudging. There is a very fine line that you should try your best not to cross. Self-disclose only for the person you are supporting's benefit, not for your own. And when you self-disclose listen more than you talk. Step up and just help. Don’t wait or sit in silence. Recognize there is a learning curve to this journey – when you are new to this, you have raw emotion. Sometimes you need to grieve. Sometimes you will be contradictory in how you feel. It doesn't mean you are lying. Always remember we are all human.
Sometimes I receive great support, sometimes not. Sometimes I witness others giving great support, sometimes not. Sometimes I myself give great support, and sometimes I sadly do not.
But it is my opinion that what we really need to do as a community of individuals who love someone with Down syndrome is to set aside our personal agendas, learn from the example of our children’s love, and try to improve in the support we give to one another. As stated above, we are human, but we can at least try.
Sorry I haven't been posting much lately. I am not even sure if I have many readers anyway, but nonetheless I look at my own blog and see the limited postings. My life has been hectic lately to say the least. I have been thinking about a lot lately, but haven't had much time to write about things or follow on the things I need to do. It seems like every other minute there is something new I need to attend to. But I need to set that aside tonight and take a little time for me.
Anyway, I do want to take a moment and talk about some great things - I can't go on and on about how very tired I am. I must state the following - I am so grateful to everyone for receiving such wonderful donations and support for our DS Awareness Walk. Janelle if you read this, you rock. Quinn is blessed to have you in her life. You have raised more money than anyone on our team and you are someone who gives so much to others. Thanks Wendy for being a great cheerleader to me and putting up with my stressed out rants. Wow the donations from so many beautiful people we know (you know who you are) - some of you I see all the time and some I don't get to see that much anymore - your gesture just lifts my spirit on how accepted and loved my beautiful daughter will be someday. THANK YOU!
I have seen this a few places now, but I know that some people who read my blog don't necessarily read other DS blogs - so I wanted to share this with all. Kelly Fitzgerald is an inspiration, but more importantly her mother is an inspiration to me. What a great family and what a great story. If you haven't seen this story, please watch it.
I haven't posted for a while - It has been crazy busy. I have been thinking about a lot though and just haven't had the time to write it down. Things like - why are there politics even in the world of DS (why can't we just come together)? What is real support? How DS can change some relationships. Stuff like that. Maybe someday there will be posts on those subjects.
Quinn has been doing great. She is more active - not crawling, but getting closer. She is scooting around. She will see a neurologist next month because her head periodically drops. Hard to explain, easier to demonstrate but obviously can't in this format. I am really proud of myself that I am not worrying about that right now. Not much you can do about it now and we just have to wait to see what they say. One day at a time....
I am also proud of how I reacted to a situation over the weekend. We were at a picnic and there was a little girl there who was born a few days before Quinn. She is doing all this stuff - walking, talking, getting herself a drink of water - she was a little spit-fire. Normally there would be this pain in my heart at those time - grieving the loss of my dream of a typical daughter. But this time, I had none of that. I noticed all this little girl could do and found it interesting the difference between Quinn and her, but the pain wasn't there. That was kind of cool. I know the pain may come back some time (it can be like that sometimes, just relapsing out of nowhere), but for now I am celebrating.
I promised Riley I wouldn't go into all the details on my blog, but every other day lately he has come along with a confession about himself for either myself or his daddy. Not sure what inspired all of this - especially since some of these confessions date back to the age of three (he is eight now). But as a parent, one could look at this in a positive manner - it means he is honest and will have guilt if he does something someday that is wrong. In addition, it also means that he is responsible and I know he will watch over Quinn (and not spend up her money) if we aren't around. That is all reassuring.
Anyway, Riley's ongoing confessions made me think about how when one becomes honest about something, it can be all so freeing. After the first confession (which was quite interesting), he felt that he could tell us anything. And so he has continued. And continued. He has even started sharing his current dreams for possible dream interpretation. I have seen this trend at work too. When a client starts opening up and trusting that they can share certain things with me, pretty soon they share all kind of things. It is a release. It becomes therapeutic to not only be open with others, but mainly yourself.
Quinn has done this for me. Before Quinn I would never have admitted certain things about myself - my life. I would under most circumstances and places have portrayed my life as near-perfection. I certainly wouldn't have talked so openly about difficult feelings or even have had a blog like this. But the reality of this situation is that it was not perfection back then - even with two typical children, things were certainly not perfection. But Quinn helped me become honest about this. I wonder how many people with typical families don't share their fears, concerns, feelings because of the drive for perfection. I know people like this. Once I "confessed" having a child with DS, it was all so freeing and the honesty flooded out like with Riley's multiple confessions. I wish this for others and am thankful for this experience. Once again the power of Quinn is apparent in my life.
I love documentaries. I am always on the look-out for them – especially ones that have to do with psychology, disorders, prison, or disabilities because of my professional and personal interests. My post-doc intern gave me a head’s up on this one, Including Samuel by Dan Habib. Here is the summary of the film:
“Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib's award-winning documentary film, Including Samuel, honestly chronicles the Habib family's efforts to include Samuel in every facet of their lives. The film also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts.
Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion.
Including Samuel has been featured on NPR’s All Things Considered, Good Morning American NOW and in the Washington Post and the Boston Globe. Exceptional Parent magazine said “Including Samuel is a must see film.” The film won the Positive Images in Media award from TASH, an international group committed to the full inclusion of people with disabilities. The film was also screened at the Sprout Film Festival at the Metropolitan Museum of Art (NYC) and named “Best Documentary” at the Somewhat= North of Boston Film Festival. The global aid group Mercy Corps is using the film to support the Iraqi disability rights movement.”
The film will be broadcast at different PBS stations throughout the country. In the Milwaukee area it will be on Saturday, September 12th. If you would like to see when and where it will be broadcast you can here.
I am drawn to these stories of families trying to figure out the best way to raise their child and the best balance of services for their child our educational system. I am unsure how I exactly feel. I totally agree with the statement from the film that having a child with a disability brings the disability rights movement right inside your house and in your living room. It was an area that I was completely naïve to before Quinn. So many people are. In fact, too many people are. And that is the problem. I want Quinn to have the same rights as everyone else. I want to take away and erase the horrible history of how individuals with disabilities were treated. But I cannot. I have learned so much about how equal rights for those with disabilities is the final frontier of the civil rights movement – how sad that they have lagged so far behind in access and equal treatment. It is really shameful of our society to be this way. But on the other hand, I want Quinn to receive therapy and services, not just get 100% the same as everyone else – she needs an individual educational plan – one with the best fit for her. She needs to know that there are other beautiful girls and boys with DS. It is just so hard to balance.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.