Shoe designed for people with special needs!

This is a great article on a new shoe designed by Nike for those who have difficulty putting on regular shoes. Could be really helpful to a lot of people!





http://www.kptv.com/story/29582869/nike-creates-shoe-specifically-designed-for-people-with-disabilities?autostart=true

Steps

Mr Sweetness and Light took his very first steps with two legs! He got to try it out for about 15 to 20 minutes. This first leg is a rough one so changes can be made to suit his uniqueness.  More work will be done on it since it couldn't be adjusted any further for him. Our prosthetist said to expect more adjustments as he learns to walk because his gait and stance will change over time. At his next appointment, the leg will get fine-tuned even more and then he will meet with the physical therapist who will help learn to use it.





I cannot begin to describe the joy I felt watching his first few steps. Since I didn't have any of my children as infants, this is the first 'first step' experience I've had with any of my kids. I wasn't sure whether to make a fuss--after all he is 15 years old and boys that age don't really want that kind of fussing since they're 'grown up now!'

New Page!

Hi everyone! Just wanted to give you a heads up about the newest page here. There can be a lot of hidden costs after you get home with your child as well as the need to find resources you weren't expecting. The newest page is called adaptive resources and will be a work in progress covering all that stuff you'll need after you're home with your bundle of joy! Check back often to see what's new!

Little bits of this and that

We received article 5 approval this week. Travel has been pushed back to December 26th with a potential consular appointment on December 30th, the last day we can possibly go. It is both a relief that the date has been pushed back and a worry since there won't be any budget room. Fundraising from all sources has jumped to nearly $2,000 for which we are extremely grateful and thankful. I'll get to work a regular work schedule for the next two weeks--weather permitting.

Got to wondering about slacks, socks, shoes, and gloves/mittens for our boy. Are there companies which make apparel for children who have limb and digital differences?

Hope you all rest easy this night in peace and comfort, and may that peace and comfort be extended to those without.

Equal isn't always equal

We in the US can shout EOOE! and ADA! all we want. There will still be those who don't embrace this and those discomfited by it and still those who remain ignorant about people with differences. I encounter this with respect to my children--especially Miracle Man. Although, as time has gone by, and he has had more surgeries, that has lessened. Especially after the last surgery where he had rhinoplasty and lip repair.

In my work life, I have to over come ignorance and prejudice on behalf of the people I serve. Sometimes it is with respect to getting volunteer positions to ready someone for real-world work. Other times it is to enable a client to receive the medical care they need. I have encountered this several times over the last few weeks. The most recent was in getting medical help for a very challenged person. The medical professional providing service thought she knew everything about my client's needs because she had a son with similar needs. This person did not see my client as an individual and would not accommodate my client's needs--going against protocols and potentially against ADA requirements. She also dismissed the diagnoses of other medical professionals with a wave of the hand: she knew everything and no one else was qualified to perform the services she did. Other medical professionals had been able to make these accommodations and follow protocols. They were not unreasonable.

Here is an article from USA Today about one family's fight to get medical care for their daughter:

http://www.usatoday.com/story/news/nation/2013/10/05/disabled-transplant-amelia-rivera/2917989/

Celebration of light, birth culture loss and growing our family culture

As I watched a family preparing themselves for a Diwali celebration at the beginning of the week, I pondered the loss of birth culture for my children. I thought about how their birth families might be celebrating and the traditions each may have for this holiday. For those not familiar with Diwali, it is the Hindu celebration of light and falls somewhere between the end of October to the first couple weeks in November. Rather than a single day, it is five days--each with its own theme. Family celebrations include special food, prayers, visiting family members, putting on new clothes, and chalk drawings.

This family  included all their members and friends in the festivities, a number of which were born with intellectual and physical challenges. My thoughts turned to my sons. How sad Miracle Man's family hasn't gotten to hear his laughter, listen to his stories, and know the pull of the charisma he exudes. Or even know that he lived and now thrives. I wish they could see him now and see the man he soon will become. Do they ever wonder about him? What is their life like now? What was it like when he was born? Miracle Man remembers enjoying fireworks set off for Diwali and the special time it was for him in India. Would he have had that in his birth family? What would their celebration have been like? And a bigger question: would they have celebrated Diwali? His family might not have been Hindu.

Miss Sunshine surely would have been putting on beautiful sari's or salwar kameez then applying bindis and henna drawings. I imagine her preparing for the holiday with her family and the joyous feeling they may have from visiting with all of their members and friends. I know her birth mother thinks of her even as she goes about her life now.

HH has lived in his birth culture all his years to date. In a little over a month he will either go from all he has known to a world so different he cannot imagine or he will stay in his birth culture but face a life of pain and shame--perhaps not knowing when he will eat again or where his head will rest after a day's toil.  Do his birth parents wonder about him? What would his life have been like if he could have remained with them? What would they celebrate in their family?

I can only give my children small pieces of their birth culture--from the outside. I can give the pieces of my culture which they may or may not keep going forward in their lives. In that way, we graft to one another to grow our family culture and make it our own. We celebrate Diwali, go to India Day celebrations, and eat Indian food. We have in the past gone to Asia Fest, celebrated Chinese New Year, and my children already home love Chinese food. Next year, these will all take on new meaning for us as we work to assimilate HH into our family and bring more of his culture into it.

1/23/2013 Convergences

This week I am dealing with convergences. What kind of convergences you ask? Everything happening at once. In November/December several areas of life conspired to have major amounts of paperwork due all at the same time. Now, household repairs. Not the ones I had been planning to do or knew I needed to do. No siree! In the past week two sinks, one toilet, the front gate, and refrigerator (just over a year old mind you!) have broken, needed repairs or required more repairs. So I've repaired the toilet, taken apart sink one and am poised to install the new hardware for it, began installation of a grab bar so HH can get in and out of the tub without problems, new hardware for the hand towel ring, TP roller, and will be ordering a double towel bar so all the kids will have their own place to hang their towels. The old towel bars, et al never stayed up. There must be some secret to tightening those teeny screws that are supposed to hold them on the brackets. Not sure what it is but I missed that lesson. In all of this, I realized I probably will need to install railings for the front and back steps for HH...there are only two steps up each but it likely will be something we'll need to do.

5/22/2011 Little "R" Update

"R" now walks around the playground, the agency reports. She likes her AFOs.  AFOs? I thought she was supposed to be wearing HKAFOs. Does this mean the casting last year improved her ability to walk that much? Is it just that that's what they have for her? They've scheduled surgery for her to improve continence when just a couple months ago they said they didn't have the resources to keep cathing her, what's up with that?! Glad to hear these things. They still haven't answered my questions from last fall. Grrrr. Maybe they just don't know on a lot of them.

Homestudy bound

April 20, 2011 Looks like we'll be doing the homestudy for little "R" next week. The house needs work but is in the best shape it's been for any of the kids' homestudies. We've received new photos and an update. I've also learned we may be eligible for an additional grant for the final agency fee. That still leaves the other agency fees, dossier preparation fees, I-800A, visa, medicals and several other expenses to get covered. I'm looking into more grants and also have taken a lot of good advise on fundraising.  I hope to be able to do a pay pal button on the blog with the funds going to the agency.  Have to see if it can be set up that way.

The kids are wondering if "R" will be able to ride a bike or scooter. I've told them it might have to be a special adaptive machine.  "R" fell, cut her chin open, and had to have stiches.  She didn't tell anybody about it and bled a lot.  They think she's got a high pain tolerance so I'm preparing for the possibility that she may have some sensory processing issues just in case.

DD won a game at school and declared she did so for her new little sister. The kids were fantastic helping in the yard today.  The front yard looks almost the way I want it to for now. We'll move work indoors probably tomorrow as I have a feeling our spring is over for a week or two and we're back into cold and wet.