We attended our first Buddy Walk just a few weeks ago. Joined by some close friends and family we celebrated the community that Elias' birth brought us to. It was wonderful to see so many people. We noticed right away that many of the children that had DS were younger. Kent remarked on this and I explained that only 10-15 years ago the best recommendation was abortion or to institutionalize them. I felt a profound respect to those who had chosen otherwise and in so doing pioneered the way for us. Its alarming for me to know that 98% of pregnancies with a suspicion of Down Syndrome end in abortions. Keep in mind this is only a suspicion. the blood tests (Triple screen) and ultrasounds tell you the likelihood of it occurring but unless an amniocentesis is done, you do not know 100%. It made us realize that we are part of a relatively young movement with the opportunity of changing how people view those with DS. The other thing that made an impact on me was that the families were all truly happy. It was about love, acceptance and the celebration of life.
We set a goal to raise money for Sharing Down Syndrome of AZ and exceeded it thanks to the generosity of friends and family all over. Truly we were touched and felt of your love and support. Thank you, thank you, thank you!
I quickly saw the value of such gatherings as I spoke with a company that offers services for physical, speech and occupational therapy. The last few weeks I've been drained as I've tried to figure out the 'system' and all it's intricacies. We filed services through our insurance first without realizing they charge $180 per session whereas they only charge $75 when filed through state Early Intervention. Then to further complicate matters, our insurance would not accept the provider that the state had contracted. Kent often reminds me that we have phenomenal insurance but they had very few that did therapies for children and all of them were in office.
Current studies show that the most effective therapies for children are done at home. First off, they are able to incorporate daily living activities into their exercises (if you have stairs in your home,they help them learn to use them, they utilize the toys you have to work on developmental milestones etc) , secondly they are more designed as a session to teach the family how to make 'play' effective. Currently we're working on building Elias' shoulder strength. I'm taught how to properly position his limbs and the kids have learned where to hold the toys so as to motivate him to hold his position. Without realizing it, Elias is exercising all the time. (Perhaps that is why we get so excited when he reaches certain milestones. Just this last week he began rolling over front and back. We have to watch out when we place him on the bed and he's tired of laying there, he'll roll his way to a new spot. He's given me quite a scare a few times!)
When we worked out the final cost to our family, we would be paying over $2000 annually just for physical therapy. Between co-pays and other therapies we would need to set aside nearly eight thousand a year. We felt the rub of being the middle class that was too rich to qualify for Medicaid but too poor for the dent it would make on our family income. Kent and I began to look into what other states offered which greatly varied. These were often more liberal states with wonderful services but sometimes there was an overload and a wait list on their systems since people had moved there just for the same reasons we were considering.
The people at DDD we not helpful and only offered the bare minimum of info. I began emailing around to others in AZ and was at a point of huge frustration when I found some answers at the Buddy Walk. While Elias won't qualify for long term disability until he is three years old, he does qualify for funding since he is developmentally delayed. This will act as a secondary insurance that will help cover costs.
I'm beginning to grasp the differences between the million and one acronyms as well as the different application forms and hoops we will need to jump through. Thank heavens for organizations designed to help and support. We'd be left in the dark otherwise.
We're so grateful for answered prayers and loving support. Thanks to everyone for everything!